Smiles for Sophie

It's Been A Very Long While

2011-10-06T14:03:00.002-05:00

I have been writing this update in my head for a long time. I realized how long it has been since I posted when I couldn't remember the "log in" information! There have been so many times I thought that I should "write that on the blog," but somehow time and other priorities get the best of me. It has been over a year since I have posted, but finally on this 4th anniversary of Sophie’s death I am inspired to share. As I try to type with Marie on my lap (please forgive the typos), I feel so many emotions.

Funny how time moves on. 4 years. It sure sounds like a long time. From day to day, it seems as time moves slowly, but when you think of time in months and years it seems like they are moving so fast. Sophie only lived seven and a half months after diagnosis. They told us she would live nine to twelve. Wow did those months fly by. Everyday during those months I just wanted to freeze time. Recently I heard that losing a loved one is like a mountain in the distance, so huge you can see it from everywhere, yet still so far away. That is exactly how I feel.

Today, 4 years later, I can hardly remember Sarah as a 1 year old at the funeral of her big sister. When I look at her now, I can’t believe, at age 5, she is older than Sophie ever was. It's strange to see her growing up and it leaves me wondering how Sophie would have been at five and a half, and how she would be today at almost eight and a half. I can't begin to imagine all the things that we have, and will continue to "miss out on." Sarah still talks about Sophie all the time. I think she knows more about death, dying, and heaven than any kid her age, but it comes with the territory I suppose. I try to explain things so she understands them, but recently she has been very bothered by the idea of being buried. There were tire tracks across Sophie's grave the last time we visited; not malicious ones; it looked like a truck had been driven across the grass to a new grave site. Anyway, Sarah was so bothered by the fact that someone would drive "over Sophie." Although Sarah has no real memories of Sophie, she speaks as though she really knows her, especially when she says, “I miss Sophie,” and “I wish Sophie were here.”

4 years can be a short time when you think in terms of a life cut tragically short by a horrible disease. But today, for me, 4 years is a long time…long enough for the smell of the nightgown that Sophie was wearing when she died to fade. I have it in the drawer of my bedside table and smell it from time to time. Just recently, I shed a tear when I realized that it is starting to smell like the wood of the drawer. For some reason, I thought it would always smell like Sophie. Now her locks of hair are the only thing I have left, that and the memories which help to sustain me. From time to time we still come across things that were Sophie’s. A half colored page in a coloring book, a paper decorated with stickers in the stack of paper in the “craft box.”

Even four years after her death, I find myself asking the same questions; how, why, what if… The feeling that I just might somehow wake up from this nightmare is still there. Sounds crazy I know. I used to be able to picture Sophie at age 5, 6 and even 7. But now, I have a really hard time imagining what she would be like as an 8 year old. I see little girls that are 8, and they seem so old, so grown up. I still imagine Sophie as such a little girl. I sit here and wonder if I will ever feel differently. They say grief comes in stages. Not sure how long each stage lasts, but I have been in this same one forever.

About this time last year I found out I was pregnant. Fast forward one year later, I get to wake up with a little miracle named Marie Elizabeth beside me. I look at Marie every day and think of Sophie. Of course I believe all babies are gifts from God, but for some reason the feeling that Marie was sent from heaven is overwhelming. I just know that Sophie had a hand in her getting her here. Since Marie’s birth, many well meaning people have asked, “What does it feel like to have two kids?” and “Will you have a third?” And I know they mean well, but my heart sinks when in my mind I answer, “I have done this before,” and “I already have three.” It’s those day to day things, that a parent who has lost a child has to deal with. And yes, it is hard for most to imagine. We all have our times of hardship, of weakness and of loss. I am not hardened to the pain that others feel . I just know that the loss of a child has got to be way up there in the “hard to imagine” category.

People say, "Find something fun to do on October 6.” Or “Try not to think about it.” But truthfully it feels comforting to think about “it.” To think about the warm, beautiful day October 6, 2007 was. To think about how Sophie was able to eat and drink that day. To think of holding her body late at night as it went from warm to cold and wanting to stay in that moment forever. To remember and reflect on the pain Sophie endured and the battle she fought. When I look at four year olds I know, I can’t imagine a single one going through what Sophie did. Just the thought of it makes me shiver.

I know many of you follow the updates of the foundation in our e-newsletter. I say thank you to those of you who support the foundation. We couldn’t be doing this work without you. Thank you for keeping Sophie’s memory alive and for caring enough to do something for the future. We don’t often get to say thank you, and as usual, words don’t seem enough, but if you have ever done anything for us and/or the foundation, we are truly truly grateful.

We will be “okay,” time will move on, and we will go through the day to day. We will forever be changed people for what we have gone through, what we have survived. As I was out walking on Sunday, I set my ipod to shuffle my entire music library, and this song from Wicked the musical (which I haven’t heard in a long time) came on. Obviously its meaning in Wicked is a lot different from what it means to me, but I must say that I am forever changed because of Sophie. http://www.youtube.com/watch?v=uzrGFQysfYU

Lately I’ve been out running again. Hoping and praying that somehow I will be ready to run the St. Jude half marathon for the second time. I remember training last year in the early weeks of my pregnancy and thinking how tired I was. Little did I know it would be a lot harder this year as my body doesn’t seem to have that “muscle memory” everyone talks about! I am counting on Sophie again to help get me through the 13.1 miles. I know with Sophie as my inspiration, along with all the other children fighting the battle and the memory of those who have gone on to heaven giving me strength, I will finish. I am so proud and honored to say there are 11 members of Team Smiles For Sophie Forever traveling to Memphis December 2. We have set our fundraising goal at $20,000. Smiles For Sophie Forever has granted us $10,000 and we are trying to match it by raising an additional $10,000. If you’d like to do something today to honor Sophie, consider donating to our team page by clicking on the link, or by mailing a check to me made out to St. Jude at 31722 Leeward Ct. Avon Lake, OH 44012 https://waystohelp.stjude.org/sjVPortal/public/displayTeamPage.do?teamId=11311&programId=401&eventId=166948 I don’t have to tell you what an amazing place St. Jude is, and ANY amount truly helps. With your help, I believe one day a cure can be found.

The last bit of foundation news for those of you local to Avon Lake is the holiday pie sale that is going on now. We’ve made it easy for you to have a delicious Thanksgiving dessert this year . Visit www.smilesforsophieforever.org for all the details.

Say a prayer today for all the families who will be told today their child has cancer, and for those whose journey will end. My prayer is that no one will ever feel my pain and have to celebrate their child's "angelversary" instead of their birthday. I wish you and your families health and happiness.

Until I am inspired again…
Xo Emily

Just 4 more days!!

2010-06-11T17:56:00.005-05:00

Next Tuesday is June 15 and what's the big deal about June 15? It's the last day of pre-registration for the 3rd Annual Smiles For Sophie Forever Birthday Bash and Dash!! In case you have been meaning to register, but haven't yet, you should do so before midnight on Tuesday (or make sure your mail-in entry is postmarked by June 15). Pre-registration is just $20 for 11 and up, and $15 for 10 and under, and it guarantees you a race t-shirt, a goody bag, entry into the door prize drawing, a kid's activities wristband (if applicable), and a birthday cupcake. After June 15, the race entry fee is $25 with no guarantees of the above items.

In addition, there is still plenty of time to fundraise!! When you register for the race, you can choose to become a fundraiser for this event. Active.com makes it really easy by sending you instructions on how to customize your own personal fundraising page that you can then email out to friends and family. If every participant became a fundraiser and sent the page to 20 friends and family who then each donated $10...WOW!! What an impact that would have on reaching our fundraising goal for this year's race and what a difference it would help SFSF make in the lives of many of the children fighting brain cancer!! Please consider becoming a fundraiser and sharing Sophie's story with everyone you know. Every dollar helps!! (If you have any problems with your fundraising page, please email me at smiklaski@cox.net.)

June 15 is also the printing deadline for the race program, the race t-shirt, and the race banner. Please see the corporate sponsor/gift in-kind forms at http://smilesforsophieforever.org/birthday-bash-and-dash for the various sponsorship levels. So if you, or a company you know, is planning to donate in support of this year's event, please be sure to make your online donation today or to postmark your check by June 15. All checks should be made out and mailed to:

Smiles For Sophie Forever
31722 Leeward Ct
Avon Lake, OH 44012

Speaking of corporate sponsors or gift in-kind donations...we still need your support!! Remember, all donations are tax-deductible. So, again, businesses out there...donate to support a local organization and let us help you advertise by including your name and/or logo (as applicable) on our printed race materials. Or if you or somebody you know has anything to donate to the Foundation to be used in the Chinese raffle or silent auction, we would greatly appreciate it...concert tickets, tickets to sporting events, sports memorabilia, hotel stays, children's activities, gift certificates, anything!! Again, June 15 is the print deadline so get your items to us as soon as you can!!

So far, we have 123 registrants for this year's race and have raised $10,656 on the active.com fundraising page!! Thank you so much to those of you who have pre-registered and to those of you who have donated and/or become fundraisers. It is truly through these donations that the previous 2 events have been so successful. At this same time last year, our active.com page was approximately $1000 more than we have now (with 129 registrants), and at this same time two years ago, it was approximately $2000 more (with 121 registrants). Let's make a big push from now until July 4 to make this year better than even the inaugural event in 2008. I know we can do it!! If you are reading this blog entry today, please take a few moments to share it with 10 people or to ask 10 people you know to donate.

Donating is easy and can be done either online or by writing a check. If you are going to donate online, one way you can really help is to make your donation on Team Nordson's Smiles For Sophie fundraising page. Kathleen Smith, of Nordson, has registered for the race and has created the team fundraising page. Nordson has generously offered to match all donations made to the team page up to $6,000!!! This is an awesome way for us to make $6,000 into $12,000!! So, you can easily double your donation by simply visiting the Team Nordson fundraising page at http://www.active.com/donate/SFSFBashandDash10/KSmith1379 to make your donation online.

Thanks to all the volunteers who have continued to work behind the scenes to make this year's event better than ever. We could never do what we do without all of our awesome volunteers. Nor could we continue meeting our mission without all of our awesome supporters and donors. So thanks again and keep it up...just over 3 weeks until race day!!

Hope to see you all there!!

Sarah

The Home Stretch

2010-06-02T19:15:00.014-05:00

Greetings. Last time I wrote I was smack in the middle of my time on crutches while I waited for my broken ankle to heal. It's been almost 10 weeks, and I am happy to say that I am almost back to my old self. The MRI of my leg came back normal and the suspicious spot I mentioned before is indeed nothing to be worried about. The white "growth" is a non-ossifying fibroma. Thank God for the small blessings! After this ordeal, I have a new found compassion for people on crutches. They never really looked that bad until I had to survive on them for 8 weeks! I am happy to say that things healed as they should and I am glad to be back as a more "active" part of Smiles For Sophie Forever!

Life continues on here and we are just about a month away from our biggest fundraiser - the 3rd Annual Birthday Bash and Dash. Wow! 3rd Annual. It's almost hard to believe. Not because we already have 2 races under our belt, but because it means we are getting closer to the 3rd anniversary of Sophie's death. I often wonder how this can be. How is it that my little girl should be turning 7 and finishing 1st grade, yet she never even finished one year of preschool? Every day I really miss her so much. I have a feeling that it might seem to some that I should "get used to" the pain of losing a child. It's a rare occasion that Sophie's name is mentioned anymore, and I get the feeling that I'm expected to move on. But grief just doesn't work that way. I'm sure you tire of me saying the same things all the time, and know I've said it before, but you could never truly understand how I feel unless you have lived through the nightmare of losing a child. What's worse is it saddens me to know that there are people out there who have lived the nightmare and do know what I feel every day.

Sarah is approaching her 4th birthday, and she still talks about Sophie, and death and heaven a lot. When I look at her, she seems so big, yet so little at the same time. I just shake my head when I think that Sophie didn't have the 4th birthday of a normal child. When she turned four, she was in the middle of the fight of her life, and just about to take a turn for the worse. Sarah's innocence reminds me what Sophie should have been doing in the summer of 2007. She should have just finished preschool. She should have been looking forward to days at the pool. Of course I know she is having the time of her life in heaven and that everyday is a day at the pool, but somedays, knowing that just isn't enough. Some days I feel so angry that Sarah never really got to know Sophie. I'm angry that she doesn't have the life long friend and sister that she was supposed to have. It bothers me even more because Sarah seems to gravitate to "older" girls when in a group. I'm sure Sophie and Sarah would have had their moments, but I truly believe they would have been awesome playmates. I hesitate to write about how the grief and sadness has a way of lingering in our lives because it seems like another reminder. Of course I would never want to forget Sophie, and I never could, but some days I still wish that I would wake up. It seems crazy to say that, but I still ask myself how and why everyday. And sometimes I can't believe it happened to us. Honestly, when I think those thoughts, I am even more determined to do something for those families who are suffering like us. I know what they are feeling. Despair in every sense of the word; many trying to hang on to hope for a miracle when every doctor out there tells you there is no cure.

So what do we do with our grief? We put it to work. The Foundation is work and a work that sometimes I wish I didn't have to be a part of. Not that I don't want to be helping other pediatric brain cancer patients, and searching for a cure; I just wish I didn't have to lose my daughter to become an advocate. Some days it's so obvious that life would be so much easier if I weren't "in charge", and if I could just volunteer here and there when I felt like it or when my scheduled allowed. It sounds selfish to me to write that, but I think that is the life of a "normal" person. A life that I will never have. I have a quote in my basement that says, "What we do in life echoes in eternity." Why I was chosen to be one whose lifelong commitement will be to spread the word and the awareness, I will never know. But it is not my job to know. Never in a million years would I have thought that this would be my life. The day before Sophie's diagnosis, I was just living life. And then I was blindsided by cancer. Just as most people are. There is so warning, no rhyme or reason. It could be any of us, and that is the scary thing.

I am so thankful for the people that God has placed in my life to help with the Foundation, and every day I remind myself that He put these passionate people in my life for a reason. How is it that some people can give so much to a cause founded for a little girl they barely knew, or never even met. Of course I can't discount the support of our family and those who knew and loved Sophie because they too have been amazing. We have come so far with the work of the Foundation and we are not stopping here.

We are in the home stretch with race planning, and could use your help in a few areas. First of all, we want you to be a part of our race. Registering early helps us tremendously. And of course we could use your financial support. You can donate to the cause though the main page, at http://www.active.com/donate/SFSFBashandDash10 or you can donate to Sarah's page at http://www.active.com/donate/SFSFBashandDash10/SarahQuayle . She is going to be running the 1 mile this year, or so that is the plan. One day she says she wants to, and the next she says she is afraid she won't win. So if you feel called to donate, we would appreciate your help. And, if you want to do even more than donate to our cause, the best way you can help is to create a fundraising page of your own. It is not difficult to do, and my sister Sarah has offered to assist anyone who needs help. We know that each of you has a whole bunch of friends and relatives who would consider supporting your efforts. The best thing you can do is to share our story with your friends and family. Not only will you be raising much needed funds, but you will also be raising awareness, and you can't put a dollar amount on that!

In addition we are looking for items to use at our silent auction and/or Chinese raffle. If you have any contacts that would be able to donate services, concert or sporting even tickets, travel vouchers, sports memorabilia, gift cards or anything of the sort, please contact michelle@smilesforsophieforever.org. We have a deadline of June 15 to be included on our printed materials, so the sooner the better would be awesome. If you want more information about sponsorship levels, please visit the upcoming events portion (bash and dash) of our website and click on sponsorship forms.

Lastly, as another way to help with race preparations, we are still in need of bottled water. If you'd like to donate a case or two, I am collecting them now and you can drop off any water you'd like to donate to my house. The water will of course be used for post-race refreshments for all our runners and walkers.

As if planning the race weren't enough, we have a few other things going on. Tonight we will be participating in "The Best of Lorain County." We have been selected as a finalist in the Best Charitable Race category by readers of pulse, Lorain County's Magazine. If you live in the area and don't have plans tonight, consider coming out to the voting and expo which will be held at the Spitzer Conference Center in Elyria, Thursday June 3, 6-9pm. We are honored to be chosen and are proud that the community recognizes our race as one of the "best." We were a finalist in "The Best of the West" in April, and for the second year in a row, we won! Thank you to those of you who voted for us.

In our last newsletter we mentioned the Dash and Dine contest by Uglu and how they are giving us a $1000 donation as part of a design contest they are doing. You can help by going to their website and voting for the designer of your choice. While you are there, you can also enter for a chance to win $1000 for yourself. Here is the website. http://my.diyideas.com/app/voting/index.jsp?id=/templatedata/diyideas/voting/data/1271865042710.xml&ordersrc=rddiy0020 You can vote daily. Please take a minute to vote for your favorite!

Also, there is a frozen yogurt place in Westlake called "Spoon Me." It opened May 15, and as part of their program to give back to charities, this location has offered to donate all of the their tips through out the month of June to Smiles For Sophie Forever. We thank the team at Spoon Me for thinking of us, and we encourage you to visit them for a taste of their fare, and while you are there, don't forget to leave a tip! If you become a fan of Spoon Me on Facebook, you can print a coupon for a buy one get one free. Bon appetit!

On Monday June 28, we will have our 4th Annual Smiles For Sophie Forever Golf outing in Grand Blanc, MI. If you would like to attend, please contact Bob or Brett Quayle or simply download the registration form which can be found under the events tab on our website. We are looking for raffle and silent auction items for this event too. If you have any Michigan connections you would like to share, we welcome them with open arms. Just call Bob or Brett at 810-238-5000 or email brettquayle@quayleandcompany.com.

Once again, I thank you for caring enough to take the time to read this and even more to those of you who take action after reading it. You'll never know how much your support means to me.

God Bless!

Our Foundation Grows

2010-04-09T16:31:00.001-05:00

I think this is the longest I have gone between postings. There have been so many times that I wanted to write, but just never made it a priority for one reason or another.

The last couple weeks have given me a lot of time to sit and think about the things that I want to share. On March 24 I tripped on a rock while running and fell and broke and sprained my ankle. I have been in a cast and on crutches for just over 2 weeks and have had a lot of time to sit and reflect. (Something that I don’t do often enough.)

In addition to the broken ankle, my orthopedic surgeon saw something “abnormal” on the x-ray and ordered an MRI. He assured me this was precautionary and that he didn’t think it was anything serious. Being a good patient, I had the MRI. I hadn’t seen (or heard) an MRI machine since Sophie was sick and the whole experience brought back many memories. Memories of the multiple times I placed my Sophie girl (who was still holding onto my neck for dear life) onto the table and then witnessed her be sedated, go limp and then strapped down.

Not a day goes by that I don’t think of Sophie and the suffering she endured. I am haunted by the physical limitations she experienced in the last month of her life and I often “see” her sitting on the couch reaching her arm out to me as I close my eyes to sleep. Although the physical pain is not fun, the emotional frustration has been worse. And as hard and frustrating as it is to crutch around and not be able to do things like I used to, I am keenly aware of how my feelings pale in comparison to the frustration that Sophie must have felt, and she rarely complained. So I suck it up and try not to complain too much while here we are, 2 and a half years after Sophie’s death, and her fight continues to give me motivation to move forward and appreciate the good things in life while taking the bad with the attitude that “it could be worse” and believe me, I know that it could.

Many of you have received our 2010 Annual Appeal, and have responded generously with your donations. And for that, we are so very grateful. Our foundation continues to grow and our financial need continues to grow with it. Kids continue to be diagnosed, and our Foundation’s name is making its way into the offices of social workers across the country. To date, we have awarded over $100,000 towards meeting our mission. We have dedicated $22,000 of it towards research and $10,000 of it to St. Jude. The rest has gone to families in need and we continue to receive applications for financial assistance almost daily. Our marketing committee worked together to create an appeal that explains what we are doing and why we need your help. If you didn’t receive one, you can view it on our new website: http://smilesforsophieforever.org/in-the-news

Speaking of our new website, I want to take a moment to thank my sister who worked very closely with our web designer Omar Trevino of Dios Designs to create the new site. Our goal was to make a site that was user friendly and informative for families looking for assistance as well as for our supporters and potential donors. I think the site turned out really great, and we are continuing to add to it each day. We welcome your feedback and comments. Feel free to use the “contact us” form on the site to let us know your thoughts.

On our website you will find information about our upcoming events. Spring and summer are our busy times when it comes to fundraisers and we are in full swing planning the events which are so vital to the success of our organization.

We would love for you to join us at our upcoming fundraisers. Currently we are taking registrations for our Mother’s Day/Brain Tumor Awareness Month Brunch on May 9 in Avon, Ohio as well as for our 3rd Annual Bash and Dash on July 4 in Avon Lake, Ohio. Please visit the “Upcoming Events” section of our website to register.

Michelle Polinko is our VP of fundraising and she would be glad to answer any questions you may have about these events. We are looking for corporate sponsorships as well as gift in kind items to be used for our raffle and/or silent auction. If you could help us in this area, we would greatly appreciate it. You can contact Michelle at michelle@smilesforsophieforever.org

Additionally, we are in the planning stages of our 4th Annual Golf Outing to be held in Grand Blanc, MI on June 28. Be on the look out for more information in the near future.

I promise it won’t be this long until you hear from me again, as we have many exciting things in the works. Our next Smiles for the Season newsletter will be in your inboxes by the end of the month. Until then, thank you for your continued support and for joining us in the fight against brain cancer. Your support goes a long way in helping us make a difference. Be well, be blessed and be grateful.

Signs from Sophie

2009-07-15T18:00:00.000-05:00

Greetings Smiles for Sophie Supporters!

I have so many things I want to say, and if I wait to put them all in one post, it will be pages and pages long! First I want to thank Marc's parents Bob and Kathy Quayle, and his brother Brett for putting together an awesome 3rd Annual Smiles for Sophie Forever Golf Outing.

For the third year in a row, the weather and company were perfect, and the event raised close to $10,000! We couldn't be happier. We thank those of you who attended and those of you who donated items for raffles. We thank Kathy's office friends and colleagues who helped solicit items and organize the raffles. Your time and efforts allow us to help 10 more families, and we thank you from the bottom of our hearts. (More information about the Golf Outing will be shared in the August issue of Smiles for the Season - our quarterly e-newsletter.)

Fine Bella Salon here in Avon Lake offered to do a fundraiser to benefit the Foundation. We are humbled by the generosity of this salon. You can find more details about the fundraiser on the main page of our website under events. If you are near Avon Lake on July 25, please stop by. We'd love to have your support.

I know many of our followers are patiently awaiting the results of the Birthday Bash and Dash - not the race results. These have already been posted! Everyone wants to know how many people we had and how much money was raised, and as soon as we get everything calculated, I will be sure to post an update.

I thought I'd wait to include what's below in the post about the success of the race, but it's too amazing to wait to share.

If you've ever been part of planning a big event...maybe your wedding...you know the stress, anxiety and excitement that comes along with it, as well as all the ups and downs you experience along the way. It was like that this year with the planning of the race. We definitely had a head start the second time around and some things came easier this year, but we did face some challenges and bumps in the road. It was stressful and overwhelming at times. But the week before the race, everything fell into place and the plans were finalized; we had one last planning meeting at Walker Road Park (where the race would be held) on Tuesday June 30.

The weather had been crazy that day. Raining, sunny, cloudy, and everything in between. As Marc and I were leaving our house for the meeting, the rain started again, yet the sun was shining. I said to Marc, "There is definitely going to be a rainbow." As we pulled into the park, Kristin was pointing to a rainbow in the distance. We proceeded with the meeting and finalized things with the volunteers, and just as we were wrapping things up, hovering over the park again was the biggest brightest rainbow I have ever seen. (In fact, in the picture, you can see it was a double rainbow.) I was in shock. It took everything in me to not burst into tears. I knew in my heart that Sophie was right there with us guiding us and encouraging us. Whether you believe in God, and heaven or not, I can offer no other explanation. It was grace and beauty and God at His best.

The rainbow on Tuesday continued to motivate me up until the day of the race, and I was delighted to watch the sun come up to a perfectly blue sky on Saturday the 4th. Although I was sure I wouldn't be seeing a rainbow that day, I was thankful that Sophie gave us another day of unbelievable weather as the backdrop for our second annual birthday bash and dash.

I know I am biased, but I have to say the event was awesome. Not perfect, not flawless, but certainly an amazing testament to what can be accomplished when people work together for a common cause.

Of course our event is a 5K race and that is a huge part of it; we had chip timing this year as a way to accommodate the "serious" 5K runners, and it seemed to be an appreciated extra. But an equally important part of our event is the "Bash". It truly is a party - a birthday bash. I know if Sophie had been here on Earth with us on July 4th, she would have loved every minute of the celebration. The smiles I saw on the faces of the children made all the days, weeks and months of hard work so worth it. And although we had some challenges with parking and starting on time, the kids didn't seem to mind. From the cupcakes to the games, to the food, to the music, to the dunk tank, to the candy scramble and sack races, to the cookie walk, bounce houses, snow cones, cotton candy and crafts, the kids enjoyed a glimpse of the heaven that Sophie enjoys daily. I have to thank Elizabeth Gedeon and Paula Koziol and their awesome planning committee and amazing group of volunteers who made this part of the race such a success!

As the event came to an end and our dedicated volunteers hung around to help clean up, tear down everything and carry load after load to the cars, the sun continued to beat down on us. I walked with my goddaughter to the balloon arch that was at the start line. We used biodegradable balloons, so sending them up to heaven was a perfect choice for disposal. As we released the arch, it floated into the sky, and as it got higher, the wind took the line of balloons and shaped it into an "S" . It was backwards to us, but it was as though Sophie was writing it from up in the sky. I just smiled with a tear in my eye, and shook my head in disbelief.

We made it back to the pavilion and continued clean up. At one moment, I just stopped what I was doing and looked up at the bright sun in the sky, and was shocked to see another rainbow in a ring around the sun. I had to look twice before I pointed it out to anyone - just to be sure I wasn't seeing things. You almost needed to be wearing sunglasses to see it, because to look at the sun without them was blinding. Volunteers stopped what they were doing and starting pointing and staring. I heard many people "gasp" and say that they had goose bumps.

To some, a rainbow on a perfectly sunny day is unexplainable, but to me, and many others there on the day that would have been Sophie's 6th birthday, the rainbow in the sky made perfect sense. (This was the second time I have seen a rainbow like this. I had never seen a rainbow in a totally sunny sky with no rain until earlier last month). Many people there were saying that they had never seen a rainbow around the sun. Some children who were still there, remarked that the bottom of the arch of the rainbow under the sun looked like a "smile" from Sophie.

When I stop to reflect on the miracle of these signs, it once again puts everything into perspective. I still miss Sophie everyday. I'd give anything to have her back with us, celebrating her birthday "in person". I'd love to see her play with Sarah who just turned three. Sarah has become quite the character, and I can just imagine what a mother Sophie would have been to her. I can't get the fact out of my mind, that Sophie's third birthday was the last one she celebrated "healthy." I remember what a happy time it was, and how excited she was to visit me and baby Sarah in the hospital just 4 days after she turned three. She was a great big sister from the start. And then one short year later in 2007, she was in the fight of her life...with three months left to live. Who would have thought??? I'm reminded again how short and precious life is, and how the simple things in life are much more important than the material. I feel blessed to have been reminded of this lesson, as it is one that I know will matter in the end.

We thank all of our volunteers and planners. And of course you, our supporters. There are so many people who put in many many hours to make the race a success. Many of you have been "with us" since day one, and for that we are so grateful. It means so much to have you standing and fighting with us. To those of you who are "new" to our cause, your dedication is equally important. To have new people joining our cause, means we are doing what we set out to do. To raise awareness and money. We know that we cannot do this without your support, and we hope you know, that your help isn't for us. It's for all the kids and families that will be afflicted with brain cancer. So I thank you on their behalf. I am including a link to a YouTube video/song that means a lot to me. The song is entitled, "Thank You" and it is written by Ray Boltz. I first heard the song at a church retreat back in 2004, and the song has been with me ever since. I share it with you, as a reminder that when you give your time, talent or treasure to Smiles For Sophie Forever, or to anyone or anything, you are giving so much more than you realize, and for that I say, "Thank You."

I also want to thank my family who has been there with me every step of this battle. My Mom and Dad alone raised over $3000 on their active fundraising page, and my sister and her husband raised almost $2500. My brother made another $1,000 donation this year, and his employer Encana matched it, for a total of $2,000. It's amazing to me that my family was responsible for raising 1/3 of the total money raised on our active fundraising page. Of course they were all in town for the event and helped non stop from sun up to sun down. I can't say enough what an awesome family I have. I love you guys!

The money, of course, is what keeps the Foundation running and helps us work our mission, but the physical presence of family, friends and loved ones, gives us the ability to fight on days when it is so emotionally draining. So many people tell us all the time how strong we seem and what a great job we are doing. But honestly, there are so many days, a year and a half after losing Sophie, that we just don't feel strong. Days when we just want to stay in bed and hope to wake up from the nightmare. It's those days that we realize that this whole life is so much bigger than us. We know we aren't in control. We know that we gather our strength from God through the presence of the ones we love and those who love us. So we thank you, for being with us at the fundraisers we hold. Your presence speaks of more support than we can explain.

Back in June my Mom suggested wearing rainbow shirts for our family photo. This was the first one we had taken without Sophie in it, and it was a perfect way to include her. It's hard to look at, knowing right where she would fit in, but it honors her and the impact she has had on all of our lives.

So today, as I say my daily prayer thanking God for the chance to be a mother to Sophie, I will thank God for all of the people he has placed in our lives who help us to make a difference. I will thank Him for showing me His love through the "signs" He sends from Sophie, and I just might ask Him to show me a few more.

Gratitude and blessings to you,
Emily

The Home Stretch

2009-06-13T02:00:00.004-05:00

Greetings Smiles For Sophie Supporters! I wanted to take a minute, or two, or three, to share with you some thoughts and some information about our upcoming fundraising events.

This Sunday, June 14, there will be a benefit concert in Trenton, MI. The concert is being performed at St. Philip Lutheran Church on Fort Street. It starts at 4:00. A donation will be accepted at the door. The concert will feature a medley of show tunes, pop and country music presented by several vocalists with pianist accompaniment. If you live near by, take a break from the yard work, and enjoy some music, all for a good cause.

The 3rd Annual Smiles for Sophie Golf Outing will be held on Tuesday June 23 in Grand Blanc, MI. Please see the website for more information and to download the registration form. In addition to golf, there will be raffles and SFSF items for sale. There is still time to secure your spot. We'd love to see you there! Find your team and mail in your registration today!

Our 2nd Annual Birthday Bash & Dash is only 3 weeks away!

Early Packet Pick-Up:
Avoid the lines on Saturday morning by picking up your packet or registering for the race a couple days early. We will take late registrations, as "Day of Race" registrations, during these times with an entry fee of $25.

Thursday, July 2, 2009, 6-8 p.m.
Dairy Queen
33720 Walker Rd
Avon Lake, OH 44012

Friday, July 3, 2009, 10 a.m. - 2 p.m.
Walker Road Park
31621 Walker Road
Avon Lake, OH 44012

If you are unable to pick up your race materials early, pre-registration check-in and packet pick-up on RACE DAY, July 4, will be from 7:00-8:45 a.m. at Walker Road Park.

TV Raffle:
Just a date change for the sale of the Sony 40" Bravia LCD HD TV ($1499.99 value) raffle tickets. They will go on sale on July 2 at the early packet pick-up at Dairy Queen and will also be available on July 3 at Walker Road Park and then on July 4 during the Birthday Bash and Dash. Tickets will be $20 each and only 200 tickets will be sold. The drawing for a winner will be held after all 200 tickets are sold. This TV was donated to us and by selling 200 tickets we will raise $4000. That will be enough to provide 4 $1000 grants to the families that so desperately need it. It's a great opportunity for you to win a great TV for only $20! Not to mention you are supporting a great cause even if you don't win!

Hotels:
The posted deadlines for the hotel room blocks has passed, however I called the three hotels and at this point, they do still have rooms available and are willing to continue to give them to Birthday Bash and Dash participants at the rates posted on the SFSF website, until all are booked. So, if you are planning on attending the race and will need a place to stay on Friday or Saturday night, please call one of the three race hotels as soon as possible to secure the discounted rates.

Deadline for printed materials:
As you may recall from my last post, the printing deadline for the program, race t-shirt, and banner was extended until June 15. That means there are still a couple of days to solicit corporate sponsorships and gift in-kind donations. If you know of any company that may be able to help us reach our $75,000 fundraising goal, please contact them this weekend, or on Monday morning!! We are still looking for goody bag items, door prizes, items for the silent auction, flowers and other decorations, as well as monetary donations. Donors can fill out the short paperwork listed on the SFSF website, and will still make the printing deadlines giving them an advertising opportunity...the website, the program, the race t-shirt, the banner or all depending on their level of support (please see corporate sponsorship forms on the SFSF website).

Race registration:
We are currently at 144 race registrants, which is great, but we'd love to see the numbers we had last year, which was 890+!! So, please tell everybody you know about the Birthday Bash and Dash and encourage them to sign up now! Last year's event was awesome and a fun time for all. The early bird registration, which guarantees a race t-shirt, goody bag, and a chance to win a door prize is $20 for adults and $15 for kids. This closes on June 27. All entries must be complete through active.com by midnight on June 27 or mail-in entries must be POSTMARKED by June 27 to be counted as early bird. After that date, the entry fee is $25 for all ages and unfortunately, no guaranteed race t-shirt, goody bag or door prize entry. But, like last year, if we happen to have "extra" race t-shirts, they will be given to late registrants on a first come, first serve basis, starting at early packet pick-up on July 2, until all shirts are gone. We highly encourage you to register prior to June 27 though, or actually AS SOON AS POSSIBLE...those guaranteed race t-shirts being worn around the area and across the country will certainly help us raise AWARENESS about pediatric brain tumors!!

Race planning meetings:
With the event just around the corner, we only have two more race planning meetings. The next meeting will be on June 16 at 7:00 pm at the Avon Lake Library. If you haven't come to any of the previous meetings, but would still like to help, please consider joining us at this next meeting. It's never too late! Certainly there is a lot of planning that has already gone into this event, however, on race day, we can use all the volunteers we can get!! If you are available on July 4 to help with set-up, decorations, parking, or anything else we might need, please come on Tuesday to see where you can volunteer. If you can give even an hour, we would be so grateful. If you want to run or walk, you can still do so. There are plenty of jobs to be had before and after the race. Please contact Kristin at kristin@smilesforsophieforever.org if you would like to volunteer. If you know of any high school students who would like to help, this is a great opportunity to earn some volunteer hours. The final race meeting will be on June 30 at Walker Road Park at 7:00 pm. This is an important meeting so if you've committed to volunteering, please try to be there. We will be updating the website with the course map in the next few days. Please check back for other updates.

As of Tuesday, we have awarded $26,000 in family grants. Although awarding the grants means that another child and their family are suffering through what we did just 2 years ago, we couldn't be more proud to be giving this money, the money from you, our dedicated supporters, to families who so desperately need it. However, we can't continue to fulfill this part of our mission without your continued support. We know times are tough for many, but if you can donate even $5 or $10, we would greatly appreciate it...no donation is too small as they all add up and allow us to continue helping families and funding research. Here is the link one more time. http://www.active.com/donate/smilesforsophie2009

I ask you to please pray for so many kids who are facing progression and struggling with the daily actions we so often take for granted. I ask you to pray for their Moms and Dads who put on a happy face for their child(ren) while their hearts are breaking into a million pieces. I ask you to also pray for a cure, so that one day, we will not need to ask for your money, because our work will be done.

A friend of mine sent me this poem yesterday. I needed to hear it. With all the stuff to be done for the race, it seems like the days have been a blur. The "work" keeps me busy during this emotional time of year. Everyday is emotional, but lately, my eyes have been welling up with tears at the drop of a hat. Often times I feel like I am going backwards in this grief process, when I should be moving forward. I thank those of you who have sent emails and/or cards to let us know you continue to think of us. It is comforting to know that you haven't forgotten Sophie and the suffering we all endured.

SLOW DANCE (author unknown)

Have you ever watched kids
On a merry-go-round?
Or listened to the rain
Slapping on the ground?
Ever followed a butterfly's erratic flight?
Or gazed at the sun into the fading night?
You better slow down.
Don't dance so fast.
Time is short.
The music won't last.

Do you run through each day
On the fly?
When you ask "How are you?"
Do you hear the reply?
When the day is done
Do you lie in your bed
With the next hundred chores
Running through your head?
You'd better slow down
Don't dance so fast.
Time is short.
The music won't last.

Ever told your child,
We'll do it tomorrow?
And in your haste,
Not see his sorrow?
Ever lost touch,
Let a good friendship die
Cause you never had time
To call and say "Hi"?
You'd better slow down.
Don't dance so fast.
Time is short.
The music won't last.

When you run so fast to get somewhere
You miss half the fun of getting there.
When you worry and hurry through your day,
It is like an unopened gift....
Thrown away.
Life is not a race.
Do take it slower
Hear the music
Before the song is over.

Today, it was nice to take a break from all of the hustle and bustle and spend the gorgeous morning at the park with Sarah and friends. I was pushing her on the swing with my "to-do" list running through my head, when I looked up and noticed a rainbow in a full circle around the sun. There was not a cloud in sight. I know it was Sophie smiling down at us.

I leave you with a portion of the message that our Race Director sent out to the volunteers earlier today. It shows you just one example of how important our work is to families battling brain cancer. It's obvious..."Pediatric Brain Cancer Doesn't Make You Smile."

"Hello Race Volunteers...

...I also have the privilege of serving as the Grant Committee
Chairperson for Smiles For Sophie Forever. To date the Foundation
has given $26,000 to help families of children suffering from brain
tumors and $15,000 to St. Jude - $10,000 of which directly
researches donated DIPG tumors. As chairperson of the grant
committee I get calls almost on a daily basis from families with a
child suffering from some type of brain tumor. Yesterday I got a
call from a social worker who was acting on behalf of the family of
a little girl who died just this week from a DIPG - she was 2 1/2
years old. Her mother had requested a grant application from me
last week. The social worker called to see if the family would
still be able to get the grant because the mother wanted to bury
her daughter instead of cremating- but she did not have enough
money to do so. I assured the social worker she would still be
eligible for the grant. When I hung up the phone my heart just
sank - again. These are the families we are helping - at all
stages of the fight against pediatric brain tumors. AND when I say
"we" I mean every person who ever raised money, volunteered time,
shared food, shared Sophie's story, passed out our a flyer,
attended a fundraiser, or put a magnet on their car. I mean -
YOU! THANK YOU! OUR WORK IS SO IMPORTANT AND WE ARE MAKING A DIFFERENCE!

I appreciate all that you are doing and CAN'T WAIT FOR THE BIG
PARTY ON JULY 4TH!

with gratitude,
Kristin"

Blessings to you all, and thank you for your continued support.
Emily

We Need Your Help

2009-06-01T10:47:00.005-05:00

Today is June 2, and the end of Brain Tumor Awareness Month. I looked hard last month for some mention of pediatric brain tumors in the media, and didn’t find much. I realize that there is an obvious lack of public awareness when it comes to brain tumors, because we just don’t hear enough about it from the media. However, I expected to hear more in May because it is now a nationally approved month recognizing “Brain Tumor Awareness” but sadly I didn’t. I wrote to a few different media sources…Oprah, The View and more, hoping to gain a national audience but I didn’t get a response. I wore my brain tumor awareness shirts as often as I could, and made it a point to mention brain tumors and tell Sophie’s story to strangers. Just because May is over, I will not stop trying to raise awareness about brain tumors, especially DIPG. Hopefully you will join me in raising awareness by continuing to share Sophie’s story.

We are getting excited about the 2nd Annual Birthday Bash and Dash and the planning is coming along nicely. We are slow with the fundraising efforts this year, so we are asking for your financial support, as this is our largest fundraiser and the primary source of income for our research and family grants. We realize that we are living in a tough economy, as family and friends of ours have had to deal with pay cuts and/or job losses. It’s hard to ask for money when we know many people have little extra to give, but when I read something from Marlo Thomas at St. Jude, it put it all into perspective. She made reference to the fact that just because we are in a recession, the needs of children with cancer are not. In fact, the recession makes the needs of these families even greater. If you are going through a tough time financially, imagine going through it with a child who has a DIPG, or some other type of terminal illness. Nothing could be worse. We were fortunate during Sophie’s illness not to have financial worries and the experience was still a living hell. I can’t imagine those families living the nightmare and also worrying about mortgage payments and food to eat. I’m asking you to consider making a donation to our race. To donate online, follow the link below, or you can mail a check. http://www.active.com/donate/smilesforsophie2009 We thank you in advance for your support. By making a donation of any amount, you truly are making a difference in the lives of families afflicted by pediatric brain cancer. You can read about the families we have helped by going to our website and clicking on the "How We Have Helped" tab. To date, we have granted almost $25,000 to families, with another $15,000 given to St. Jude, of which $10,000 has been designated specifically for DIPG research.

We are hoping to make another donation to fund a research grant of some type. We don’t know yet what it might be, but we realize the need for a cure as we read about more and more children diagnosed with brain cancer who are given very little hope. I’m including some information that I found through the DIPG online group. It’s another wake up call regarding the deadliness of DIPG. In a Korones Review article from 2007 regarding DIPG it says ".... We have made little progress in curing children with the devastating and vexing tumor. It's deep and critical location precludes surgery, its transient response to radiotherapy, its refractories to chemotherapy and its elusive biology have all conspired to make it a uniformly lethal disease....." The Mikey Czech Foundation recently released some stuff from Dr. Mark Kieran "During the past 35 years, there have been 250 clinical trials for DIPGs and not one of those has been successful. Not one!" So please, I can’t say it any other way…we need your financial support!

Below is more information about sponsorships for the race, as well as information about the TV raffle that will start on July 4th. We are discussing the possibility of having a few silent auction items at the race, so if you have items to donate, please contact Kristin at kristin@smilesforsophieforever.org We thank you again for your support, and we would be honored to see you at the race on July 4th! You can register online at http://www.active.com/framed/event_detail.cfm?EVENT_ID=1718940&CHECKSSO=0

ADVERTISING DEADLINE:
The printing/advertising deadlines for corporate sponsors, gift in-kind donors and personal donors has been extended to June 15. So, if you were planning on donating to support the SFSF Second Annual Birthday Bash and Dash, please get your donations in so you will be included in our printed materials. See the list below for the various donation levels and corresponding advertising.

Red ($100): internet advertising
White ($250): internet advertising, name on race day program
Blue ($500): internet advertising, name on race day program and race tshirt
Firecracker ($1000): internet advertising, name/logo on race day program and race tshirt
Grande Finale ($2500): internet advertising, name/logo on race day program, race tshirt and race day banner

If you will be donating at the $1000 level or above, please be sure to email your logo to sarah@smilesforsophieforever.org.

RAFFLE:
This year SFSF will be holding a raffle for a Sony 40" Bravia LCD HD TV ($1499.99 value). There will only be 200 tickets sold and the tickets are $20 each. Tickets will go on sale on July 4, during the Birthday Bash and Dash, and the drawing for the winner will be held when all 200 tickets are sold.

SPONSORS AND GIFT IN-KIND DONORS:
If you know of any company who might like to be a corporate sponsor or of any company who may be able to donate items we could use, such as flowers, food, water, goody bag items, etc, please contact them ASAP. The slow economy has definitely affected the race this year, but there are still kids and their families who need our help. To date we have awarded $21,500 in family grants and we know the applications will continue to come. So, please solicit support from wherever you can. All applicable forms are on the SFSF website.

Looking Ahead

2009-04-07T21:20:00.016-05:00

Since I last posted, we have been moving along with the efforts of the Foundation, while taking each day at a time.

On March 7 we were in Cincinnati at The Cure Starts Now gala. It was a fabulous event that raised A LOT of money - over $150,000 for their foundation which is committed to funding research for a cure. At the gala, Marc and I presented TCSN with a check for $10,000 from Smiles for Sophie Forever to fund a specific research study at St. Jude focused on tissue analysis of DIPG. Part of the mission of Smiles for Sophie Forever is to fund research, and that is easier said than done. It's hard to guarantee where the money goes when you give to a research charity. We chose to partner with, and give to TCSN because their foundation has already begun funding this research and they are in the process of renewing the research grant and are in need of more money. Analyzing tumor tissue is very near and dear to our heart. Obviously donating the tumor is important to us, because we did donate Sophie's tumor, and we strongly believe that these biopsies are what will eventually lead the researchers down the right path to finding a medical cure for the dreaded DIPG. Keith and Brooke Desserich of The Cure Starts Now, lost their daughter Elena to DIPG in August of 2007 -a few months before Sophie. Elena, like Sophie was treated at St. Jude and Brooke and Keith have a great relationship with St. Jude. TCSN has invited me to sit on the Medical Advisory Council of their foundation, so that we (SFSF) will have a "say" as to what research should be funded in the future. Our plan at this point is to partner with TCSN and continue to fund research through the research grants that are determined by their foundation. Please visit www.thecurestartsnow.org for more information.

Since we started our "family grant application process," we have awarded over $7,000 in grants to families. We continue to receive requests for applications daily. So to you, our supporters, your money is being put to great use. Thank you! A family with a child with brain cancer can apply for assistance from us by filling out a fairly simple application. We then write the family a check for $1,000, and each family can apply 3 times per calendar year. For many families with medical bills mounting, it may not seem like much, but it is a start. Our goal is to one day have enough money to raise the amounts of these grants, while continuing to raise money for research so that one day we won't have to provide these grants because a cure is found!

We have two events coming up for the Foundation that you can "register" to participate in. One is the Mother's Day/Brain Tumor Awareness brunch which will be held at Avon Oaks Country Club in Avon, Ohio on May 10. You can read more about the event on the website and you can also find out how to purchase your tickets. We have a limited number of seats available, so please if you are looking for a place to take Mom or Grandma on Mother's Day, buy your tickets today. It's a great way to treat Mom and support our foundation at the same time!

The second event is our 2nd Annual Birthday Bash and Dash...aka the 5K and 1 mile Run/Walk. Last year we raised over $50,000 and this year our goal is $75,000 and we know we can do it with your support! Again, visit the website for information on how to register. You can also find some detailed information on how to help us by becoming a fundraiser. We know the economy is tough and money is tight, but imagine the money we could raise if we all became fundraisers and we all found 25 people to give $10. If you stop for a moment and think about your life, and your struggles because of the economy, imagine the added stress and worry if you were also dealing with a child with a terminal diagnosis. I'm sure you realize that life, for many of us, could be much worse.

Having said that, in the next couple days, many of you, our loyal supporters, will find our annual appeal in your mailbox. Please take a moment to read more about us, and how you can help. We urge you to donate to our cause so that we can continue to fight for children and their families diagnosed with brain cancer.

On March 28 we traveled to Pennsylvania to run in the 5k Race for Grace. Wow! I didn't know that Pittsburgh had so many hills! They certainly made the run tough, but seeing those on our "team" wearing the shirts with Sophie's picture on it made it easier. Here is a link to an article about the event. http://www.wpxi.com/news/19036532/detail.html

As for us, we continue to take one day at a time. Have I said before that it doesn't get any easier? When I stop and think that Sophie has been gone from us for 18 months, it hardly seems possible. It seems that by now we should be "getting better" but we just aren't. I know that is not very inspiring to those of you reading, but every moment of every day is another memory, another "what if?" Sarah is growing up so fast, like it seems all kids do, and that is one of the saddest parts of this whole ordeal; that Sarah doesn't have Sophie. Sarah is almost three, and she is starting to ask more detailed questions about Sophie and heaven. She still says she wants Sophie to come here. We tried explaining to her that Sophie was "sick" and that is why she went to heaven, and that once you go to heaven, you don't come back. It's a hard concept for a two year old who takes things so literally. We don't want to scare Sarah, but we want to be honest; just as we were with Sophie. We tried using the "ice cube" analogy for the tumor when we explained it to Sarah. I'm not so sure she got it, because the other day at the bookstore, when Sarah got hot apple cider (and it was too hot to drink, I asked the man for an ice cube) she got the look of fear in her eyes and said, "I'm allergic to ice cubes." (She is used to using that word because she IS allergic to a lot of things.) When I told her she wasn't allergic to ice, and that the ice would cool her cider down, she said, "It will make me sick in my head and I will go to heaven like Sophie." Wow! Try having that conversation in the Starbucks line. I'm sure we have a long line of explaining ahead of us. Sarah is too young to really remember Sophie, and doesn't have a need for grief counseling, but I am realizing it will take a lot of years of explaining.

With Easter coming up, I am reminded of sacrifice and what we do for love. Easter was the last holiday Sophie celebrated. We went to Easter vigil mass in Memphis because we were still at St. Jude. I remember it was so cold. Sophie was nearing the end of radiation and starting to regain some mobility. She was so excited to collect the eggs around "Grandma's apartment." The memories are crystal clear. Oh how I wish she was still here to collect eggs with Sarah.

I think of the struggling and suffering that Christ endured, and I think of the struggling and suffering that Sophie endured. While Jesus understood the suffering and what was to come, Sophie had no idea. She was a child and couldn't begin to understand the madness of it all, yet there was almost always a calmness about her. I know we all face things that we cannot control, in fact I have realized there are very few things in life that we can control. I find myself getting very good at giving it up to God. I remember Sophie singing the song "Were You There?" in church. How cute her voice was when she said "to tremble, tremble, tremble." Of course at the time, she didn't realize what she was singing; or maybe she did. (My sister posted about this song in the "inspiration" section of the SFSF website.) For me, remembering Sophie's death, causes me "to tremble, tremble." Will I ever not feel that way? Probably not. With your help though, I will tremble less knowing that together we can make a difference so that other Moms and Dads will not tremble remembering their son or daughter taking their last breaths. If you haven't heard the song, you can click on the arrow play button at the top right corner of this blog. And while you are there, you can also listen to another song that I've become very fond of. It is called "Where Angels Hang Around." It is a song about St. Jude, and if you have been there, as a parent of a child receiving treatment, the lyrics will touch your heart.

Happy Easter and Happy Spring. Today, I ask you to pray a special prayer for those who are suffering and I ask you to consider making a sacrifice so that you can make a donation to our foundation to help those who do suffer. God Bless you.

Looking Back

2009-02-17T20:45:00.009-05:00

I want to take a moment to thank those of you who helped with and/or came to the fundraiser for Derric Williams on Feb.7th.

Personally, I want to express my appreciation to those of you who helped with the bake sale. That was my "responsibility" and we had plenty of items to sell, and we sold the majority of them. Thank you all for baking.

The event was a huge success, and I was honored to be a small part of it. It was amazing for me to witness people putting their own lives and "to do" lists aside to help a little boy and his family. People changed their plans and/or made arrangements to be there, and some people didn't even know Derric. I think that is remarkable!

It was pretty emotional for me to be in that environment and to be on the giving end. It was almost two years ago that a very similar event was held in that same hall for Sophie's benefit, only I was not there, because I was with Sophie at St. Jude while she received radiation. Marc however, was at Sophie's first fundraiser, and honestly, I don't know how he did what he did. He helped so much with this event and I am so very proud of him.

While at the fundraiser, a friend of ours, (who worked for Philip Morris until she retired this past year) gave us the pictures you see below. These two photos were the last ones taken of Sophie before she died. They were taken on the 6th of October, at Marc's work picnic which we attended in the morning. Obviously we would not have gone to a work picnic if we knew what was to unfold at 11:55 that evening.

When Marc handed me the pictures, I couldn't

even breathe. My heart broke into a million pieces all over again. The last pictures we thought we had of Sophie were those from October 4th, and though she looked "broken" in those, the photos from October 6th are shocking. I forgot how badly the brain tumor robbed Sophie of her physical abilities. Her ability to sit up straight, close her mouth, close her eye, lift her arms, adjust her body... Not to mention what the steroid did to her. She was four and in a stroller. Looking at those pictures, I can see deep into her soul, and I know that she would not have wanted her picture taken, but had no way of saying that. I see how tired she was, how frustrated she was, and how much she was suffering, and cannot blame her for going home to Jesus.

While Sophie was ill, Marc and I chose not to share many of the pictures that were taken during the fight of her life. We held onto hope that one day she would be back to "normal" and we wanted others to see and remember the Sophie we always remember. Recently we made the decision to share them because these photos show the true reality of the disease. Our hope is that after looking at these photos, parents around the world will truly realize that this could be their child. We need your help and support in searching for a cure, so that it might never be your child.

I dug out our Valentine supply box for Sarah this year, and was surprised to discover a stack of Valentines that Sophie had started in Feb of 2007. Valentine's Day was right before she was diagnosed. The memories of Sophie making - or not wanting to make - those Valentines is so clear. I expected her to be so excited to write her name on them for her preschool party. But instead she whined and fizzled out after just a few. Looking back, I now know how shaky her hand was, and how hard it must have been for her to form her letters.

I am horrified at this disease even more than I have ever been. I have been updated through the DIPG Yahoo group of 3 more children who have lost their battle to DIPG this month.

This Saturday, the 21st of February will be two years since the dreaded date of diagnosis. I will never forget that day...being called into a tiny room by a

neurosurgeon who gave us the diagnosis and told us that we wouldn't be needing his services because Sophie's tumor wasn't operable and they was nothing he could do. I hate the week leading up to the 21st, and I hate the 21st. As hard as this week has been, as hard as Saturday will be for me, and as much as I want to escape the world of DIPG for awhile, we will be surrounded by the reality of it at the Prayers From Maria Sunflower Soiree at the Corner Alley on Saturday night. www.prayersfrommaria.org.

Obviously, we wouldn't choose this date as a day to go out, try and put on a smile and have a great time, but we feel supporting other foundations in the fight to cure brain gliomas is an obligation as well as an honor, and one more step in raising awareness and finding a cure.

My sister and her husband are driving in to town to attend the soiree with Marc and me, and we are so grateful for their support. If you don't have plans for Saturday, I invite you to come out and show your support in the fight against DIPG.

On March 7, we are heading to Cincinnati to support another foundation committed to curing the monster called DIPG. The Cure Starts Now foundation is having a "Once in a Lifetime Gala" in downtown Cincinnati. If you live in that area, or feel like making a road trip, it would be great to see you there! Visit www.thecurestartsnow.org for more information.

I want to remind those of you who have been gearing up to help with our 2nd Annual 5K race that we are having our first planning meeting on Tuesday Feb. 24 at the Avon Lake Library McMahan room. The meeting will start at 7:00 p.m. If you would like more information, please contact kristin@smilesforsophieforever.org.

Finally, I want to thank those of you who have already donated for the 5K race we are participating in on March 28 in Pittsburgh. My Mom has registered for the race and has been training to run it with me. She has joined our fundraising team, and so far we have raised over $700 for the event. If you would like to donate, we would be so grateful. Any amount truly helps and can make a difference for a child with brain cancer. Here is the link to our fundraising page. http://www.active.com/donate/RaceForGrace2009/EQuayle

I thank those of you who continue to let us know that you are thinking of us. It really means a lot to get a card, an email, or a phone call just to let us know you haven't forgotten Sophie, and that you are still praying. Fr. Tim once said that "Time doesn't heal, God heals." and I couldn't agree more. The passing of time doesn't help or lessen the pain and heartache of missing Sophie, but the prayers from so many of you make the burden a little lighter.

When you are frustrated with your children or your life, think of Sophie, and realize just how good you have it. For the saying, "It could be worse" could not be more true.

God Bless.

News for the New Year

2009-01-01T13:37:00.010-05:00

Merry Christmas and belated new year wishes to you all. Hopefully you all had a chance to spend the holidays with those you love. We didn't travel to Florida on Christmas like we did last year, and I wish we would have. It was hard for us to put on a happy face and act like everything was just fine, especially when it seemed like most people moved on and celebrated Christmas just like nothing was different; when to us, Sophie's absence at the celebrations was the elephant in the room.

For many people, Christmas is a time for giving and receiving gifts. And it used to be like that for me. But since Sophie has died, the idea of asking for gifts has become so trivial. I wanted to scream when people asked me what I wanted for Christmas, because the truth of the matter is, that what I wanted for Christmas could never be bought at a store, or wrapped in paper and bows. Don't get me wrong, I enjoy buying presents for others, and the anticipation of Christmas, but the commercialization of Christmas really bothered me this year. I tried to stay focused on the reason we celebrate Christmas, and why we exchange gifts instead of asking for "stuff", and that helped me put everything into perspective.

I would like to thank those of you who so generously made donations to our foundation or to St. Jude. Those truly are the gifts that mean the most to me.

Somehow I keep thinking that the days will be easier, but they just aren't. Like last year, the beginning of a new year stirs up many feelings. A fresh start is always appealing, yet with each new day and new year, the days when Sophie was here get further and further away. It's strange to think that it wasn't "last year" anymore that Sophie died. I was reading a blog that mentioned the kids that died in 2008. I was surprised that Sophie's name wasn't on the list, and then it occurred to me that she would have been on the 2007 list. I honestly can't believe it's been so long. There has not been one day, probably not one hour, nor even one minute that I haven't thought of Sophie during the last 15 months.

Over the week end, our little Sarah made the transition into a big girl bed, and for her that meant moving into Sophie's room. It was bittersweet because we liked having a room in the house that was still Sophie's (although the rainbow guest room will always be hers) but at the same time, it was a transition for us that we felt ready for. We know that Sophie would want Sarah to have her room, and Sarah is proud to have it. Sarah has really been taking me by surprise lately as she tends often to mention Sophie out of the blue. At times, I am not sure how much her little two and a half year old mind comprehends because she frequently tells me she wants Sophie to come here now. While I was putting the bed rails on the bed in her new room (Sophie's room), Sarah was reading books to her dolls and then all of a sudden she got quiet. When I looked at her, she was staring off into space. I said "Sarah, what are you doing?" She just smiled at me and said "Sophie". I asked her "What about Sophie?" and she didn't say anything else, but went back to reading to her dolls. I wondered if she felt Sophie's presence.

We were watching videos over the holiday and one of them had Sophie in it dancing with a large Dora doll/pillow. She was about Sarah's age, and Sarah was convinced it was her in the video. She became obsessed with the whereabouts of that Dora doll. She kept asking where it was, and saying she wanted it. Now I found that strange because she inherited more Dora toys/dolls than you could imagine from Sophie, and the one doll that seems to have disappeared was the one that she wanted. She even started crying, and was really upset that we didn't have that doll anymore. She said, "Let's go to heaven and get it." It took us a while to calm her down. I had forgotten about the episode, and a couple days later Sarah said to me, "Sophie is in heaven with a really big door." I asked her "How do you know the door is big?" and she told me, "Because she had to get that big Dora doll in with her."

We sold all of the ornaments that we had purchased! Thanks to all of you who supported us again in our fundraising endeavor. Next year, we will be doing this again and hopefully we will have the information out right before Thanksgiving.

Our foundation has mailed one check to a family fighting DIPG, so your dollars are being put to good use. We have received several more requests for the financial assistance application, and hope to award more money soon.

We are in the early stages of planing a brunch to be held on Sunday May 10th in honor of Mother's Day and Brain Tumor Awareness Month. If you are looking for a way to celebrate with Mom, why not support our cause as you dine with family and/or friends. More details will be coming soon. Please save the date.

Even though it is only January, and freezing here in Ohio, we are thinking about the 2nd Annual 5K on July 4, 2009. Yes, we will be holding this event once again this year, so please save the date. More information will be coming soon.

I would like to take this opportunity to ask for your support in helping another Cleveland child diagnosed with DIPG. His name is Derric Williams and his website is http://www.caringbridge.org/visit/alotofloveforderric . A fundraising dinner catered by Bubba's BBQ is being held on Saturday February 7th to offset medical costs and transportation. To see the flyer and for more details, please go back to the www.smilesforsophieforever.org homepage and click on "Smiles For the Season". Thank you in advance for your support.

There is another local event coming up put on by the Prayers From Maria Foundation on February 21st. It is the 2nd Annual Sunflower Soiree and it will be held at the Corner Alley in downtown Cleveland. We went last year and had a great time. For more information and to buy tickets, please visit www.prayersfrommaria.org

Finally, I would like to share with you the opportunity to participate in an event being held March 29th near Pittsburgh, PA by our friends Tamara and Brian Ekis of Reflections of Grace. This is a foundation that they started in honor of their daughter Grace who lost her battle with DIPG last Valentine's Day. Marc and I are running this race in honor of Smiles for Sophie, and have started a fundraising page. You can donate to our page by clicking on the following link. http://www.active.com/donate/RaceForGrace2009/EQuayle All donations will go towards to the 2nd Annual Race for Grace. We will be truly grateful for any amount you can give. If you'd like to join us, and register for this race, or donate to the cause, or read Grace's story, please visit www.reflectionsofgrace.org. We thank you in advance for your support.

We hope 2009 is a year filled with many blessings for you and your families. Please remember to pray for those children diagnosed with brain tumors. I've heard of at least 4 families with children diagnosed with DIPG just in December of 2008, and I'm sure there are more. For a list of children affected by brain cancer, please visit www.icouldbeyourchild.org.

Merry Christmas Sophie! We love you.

Exciting News

2008-12-16T10:48:00.008-05:00

Wow, I have a lot to share!

First, I've included pictures of the awareness tree that we decorated in honor of children who have battled, or are currently battling brain tumors. I received more than 90 requests so there are almost 100 names on the tree. Obviously that is just a small percentage of the children diagnosed with brain tumors, but we felt this was an important step in raising awareness during this holiday season.

The other pictures you see are from the St. Jude Grizzlies House 5K that I participated in on December 6th in Memphis. I made the drive with two of my good friends and fellow Smiles For Sophie Forever board members, Kim Walters and Elizabeth Gedeon. These two overachievers didn't settle for the 5K, they both ran the half marathon. I was happy to share the experience with them, and am so very grateful for their support and friendship and commitment to a cause that they know is so important to me.

The race was such an awesome experience. There were 14,000 total people registered to run in the 3 events, and 3,000 registered for the 5K. I am happy to say that, yes, I finished the run. You know from my last post that I was unsure of my ability, but on race day, I know that Sophie carried me. I definitely didn't win any awards and finished in 35 minutes and 22 seconds, but still I finished and felt good doing it. There were times when I thought I might walk, but never did. I actually finished the race feeling like I could have kept going. It was an emotional day and I worked hard to keep my composure for fear of having a break down. Of course being there without Sophie was tough, and seeing the hospital grounds and the look of downtown took me back to a time with Sophie. The 6th was also the due date for the baby I lost back in June. Again, the day was one I look back on and wonder how I survived, but once again, I realize that it is so much bigger than me. Looking around at all the people there supporting such an amazing facility made the 12 hour drive so worthwhile.

While I was there, I met up with Becky Jones (mother of Sam Jones) and her three friends from Michigan. I first met Becky at St. Jude back in the spring of 2007 while Sophie was receiving treatments. At the time, Sam (also diagnosed with DIPG) was there receiving a follow up MRI. Now, a year and a half later, Sam and Sophie watched Becky and me finish our 5K from their special place in heaven. I know they were with us throughout the race and I hope our attempts in raising money for St. Jude might make a difference in the treatment of DIPGs so that other children won't face the same fate.

Sophie gave me many signs that weekend to let me know she was with us. From the rainbow colored arch that marked the start and finish line, to the number 11311 on the bib that my friend Kim wore, to the rainbow reflection streaming through the window in the ALSAC gift store, Sophie was there.

Kim and Elizabeth (who have run other races) said they were impressed with the organization and friendliness of the people running the event. Kim even said that she would tell someone considering training for a race, that this is the one to do. I think that speaks for itself. I plan on being there again next year. If I was really ambitious, I might shoot for the half marathon, but the realistic part of me is sure I will be running the 5k in 2009.

I want to thank all of you who have given me financial and emotional support. Today I mailed the envelope with exactly $6500 to St. Jude, and I couldn't be more proud. Lately I've really realized that it is in giving that we receive, and I owe this to all of you. I appreciate all of you who continually asked me how the training was going (even when it wasn't =), those of you who called or emailed to say "good luck" and also those of you who showed me your support in the form of a financial donation to St. Jude which will make a difference in the lives of children receiving treatment. Did you know that it costs over 1 million dollars A DAY to run St. Jude? So thank you for your support. It means more than you know.

If you are in need of holiday gift giving ideas, please consider shopping from the Smiles For Sophie gift store. We have some cool things that would make great gifts and help us raise awareness. We are still selling ornaments, so you can go to www.smilesforsophieforever.org and look under "upcoming events" and find out how to order one. Another way that your holiday shopping can benefit the foundation is by clicking on the "igive" link under "ways to help". This is an online shopping portal that gives a portion back to the foundation. There are many stores to choose from, so if you plan to do some shopping online, it would be great if you would use igive.

Another foundation dedicated to finding a cure for DIPG is selling holiday cards. Here is a last call for this year's cards.
The Cure Starts Now holiday cards were designed
by three wonderful kids: Andrew Smith from Michigan, Ellie Willaert
from Minnesota, and Caleb Spady from Oklahoma. All three kids are
battling brain cancer and have put their heart and soul into
designing truly unique cards to represent The Cure Starts Now. Please
help us honor these kids, and every child battling brain cancer.
Proceeds go towards funding brain cancer research at respected
children's hospitals nationwide.

The holiday card pack contains 18 cards including a sampling of each
of the 6 custom designed cards for $18. Each card tells a little bit
about the child who drew the picture and about the need to fund
pediatric brain cancer research. Order by Thursday and get them by
the end of the week- There is still time! Please support brain cancer
research while spreading holiday cheer. Cards can be purchased at
www.thecurestartsnow.org under "Merchandise"

Lastly, I have some news that I have been waiting to share since we formed the foundation and set our mission. We are finally ready to begin awarding grants to families battling pediatric brain tumors. If you are the parent/guardian of a child with a brain tumor, you can request an application through our website. It's been about 6 months since we began our fundraising efforts, and we are so excited to be able to do one part of what we set out to do. To request an application, go back to the www.smilesforsophieforever.org home page, and click on "Grants for Families" in the top tool bar to find out how.

Obviously, we want to find a cure. That is why we give to St. Jude, as well as other organizations that are raising money for research grants. If we knew the cure would be found soon, we might consider allocating all our money to research, but the fact is that while we raise money to help search for the cure, children will continue to be diagnosed with brain tumors and we can't ignore the financial challenges families face while caring for their sick children. In the next couple of months we will be adding a spot to our website so that other non profits committed to finding a cure can inform us of their efforts to raise money for research. Then the Smiles For Sophie Forever board will meet to allocate these funds.

We are so so excited to announce this to you, our loyal supporters. We feel this is so fitting given the season and we will certainly keep you updated with information about the families that we help.

Thank you again for your continued support. We appreciate all the kind wishes, holiday cards, and thoughtful emails to let us know you remember us and how difficult the holidays are without Sophie.

We in return wish you all a Merry Christmas and a blessed New Year. Please keep all the families who have lost children in your prayers, as well as those children and families who are currently fighting cancer.

God Bless You!

Rainbow Christmas Ornament

2008-12-05T15:56:00.017-05:00

Your response for the rainbow Christmas ornament was overwhelming. The demand has far exceeded both our expectations and supply.

To meet the numerous requests, we contacted

several companies and suppliers. all to no avail.

We were able to find another rainbow ornament, different in size, construction, material, color, and cost.

The new ornament, in generous supply, still features our signature rainbow (see photo above ) and a Smiles For Sophie Forever ribbon for hanging. We've taken the liberty of substituting this ornament for the original at the same cost to you. Most orders received after December 4 will be placed using the ornament pictured here. Please contact Emily at quayleem@oh.rr.com before Wednesday, December 10 if you do not want the newer version. Your check will be returned. Orders will continue to be filled with our new supply. Thank you for your support and interest, so very fitting in the spirit of the Christmas season. God bless you.

With Gratitude

2008-11-27T13:03:00.000-05:00

Once again, I wanted to post on the 6th, but just couldn't do it. I feel like I say the same things every month.

Not what we say about our blessings, but how we use them, is the true measure of our thanksgiving.  ~ WT Purkiser

November 6 came and went without a post. Many times posting something positive can be difficult, so I don’t post at all. I want so badly to share "happy" thoughts. We stay busy hoping to block out the pain. A year later, you would think I would know that doesn’t work, and it’s better to just acknowledge it. Yet sometimes letting the pain “in” is so raw. I long to be happy, yet I still have the nagging feeling, heavy in my heart, when I think about the 6th of each month. Here are a couple of the things I have been doing lately to stay busy.

The picture you see at the top of this post is our first Christmas ornament which is now for sale. We debated about using Sophie’s rainbow artwork for the ornament, but decided that for the foundation’s inaugural year, a true rainbow would be best. The ornament is a three inch glass rainbow ornament marked 2008 and hung with a Smiles For Sophie Forever ribbon. We have a limited number; so if you’d like one, please order it soon. I know I am biased, but it sure is a pretty little thing and I know Sophie would approve. Each ornament is $10.00 and shipping will be $5.00 per order (regardless of how many you buy.) To order, please send a check to Smiles For Sophie Forever 31722 Leeward Ct. Avon Lake, OH 44012. Please include a phone number or email address so that we can contact you if we run out of ornaments.

All proceeds go back to the foundation so that we can further our mission.

We are also in the process of collecting names for an “Awareness Tree” that will be on display throughout the holiday season at the University Hospitals Medical Center on Clague Rd in Westlake Ohio. If you know a child diagnosed with any form of pediatric brain cancer and would like them included in the tree, please email me at Emily@smilesforsophieforever.org the following information about that child:
Name
Age
Type of cancer

On the 6th of December, I won’t be posting because I will be in Memphis at St. Jude participating in the 5K. I’m anxious about the event, but hopeful that I will be able to complete the run. I’m not a runner; never have been, so finishing it is my goal. I’ve had a few set backs in my training. From knee, to ankle, to burned hand, to tinnitus, I’ve had my share of obstacles. I am looking forward to the challenge, and know that if Sophie endured what she did, I can suffer through the pain of a mere 3.1 miles!!!!

As of today I have collected around $6,000 for St. Jude, and I am grateful for everyone who has supported me. I know times are tough right now, and so your donations mean even more. I am still collecting donations and I can mail them in to St. Jude up to two weeks after the event. So if you feel called to give, please send the check to me (made out to St. Jude) to 31722 Leeward Ct. Avon Lake, OH 44012.

This time of year is one of so many emotions. I can’t believe it is the third year that I placed the thanksgiving centerpiece on the table that Sophie made in preschool, yet she was only here for one of those three years.

Recently I had a bad habit of getting on the computer after Sarah was in bed. I would catch up on all the posts from the DIPG Yahoo Group and read about the kids newly diagnosed, those doing well, those in progression, and those in the final stages. (And I wonder why I still have a terrible time falling asleep each night.) As if thinking about Sophie wasn’t enough, I went to bed thinking about all of the other kids and their families. When I think of these families and children, it makes me remember…

I remember how extremely hard those days of progression were. I remember them like yesterday, and I think I always will. I remember how hard it was to be patient and giving all the time. I remember how Sophie always wanted me to hold her. I remember how heavy she was, and how difficult it was for me physically to lift her and carry her, and support her weight. I remember feeling guilty for taking the time to take a shower and dry my hair. Even though those showers where the only time when I could cry and cry and Sophie would ‘t see me. I remember how my heart felt to be torn open each time I would look at her and she would reach out her left arm because she could no longer speak. I remember that was her only way of communicating. I remember how she would get frustrated with me when I would get out our communication board when I didn’t know what she wanted. I remember realizing that what she was really trying to tell me could never be found on a communication board. I remember that all she wanted was for me to be close. I remember how she would rub her belly (that was how she said she was hungry) and I remember feeling sad as all I could offer her was another bowl of soggy Life cereal. I remember the laundry, the cleaning, the care Sarah needed. I remember trying to juggle it all. I remember wondering how I could get through it. I remember thinking that there is nothing worse than a child with cancer. I remember how tired we all were, and how I begged and pleaded with God to give me the tumor because it just wasn’t fair. I remember the tear that was falling from Sophie’s eye the night she died. I remember learning the true meaning of stress, and the true meaning of love.

And despite all the hard times and “bad” memories of Sophie’s illness, I am thankful for that lesson of love. I am thankful that I have friends and family who support me in doing what I need to do to make sure Sophie did not die in vain. I am thankful for those who seem to know when to offer to help, as those offers always seem to come in when I am feeling discouraged, overwhelmed and not sure if I could ever do enough to find a cure. I am thankful for God’s guidance and encouragement, as there are days when I want to curl up in bed and stay there, and let someone else fight the fight. I am thankful that I got a glimpse of the lesson here on Earth, and I am thankful for God’s patience as I learn it. Happy Thanksgiving to you all. May you realize all you have to be thankful for. Be grateful for the little things. For one day you will look back and realize they were the big things.

Do not get tired of doing what is good. Don't get discouraged and give up, for we will reap a harvest of blessing at the appropriate time.  ~ Galatians 6:9

Please say a prayer for all those families and children fighting this cancer. That they may live in the moment and enjoy the day and all they DO have to be thankful for.

Please pray for those who have lost children. Every day is hard, but holidays are even worse. Pray for peace and comfort, and signs from the children who are so dearly missed.

Feeling gratitude and not expressing it is like wrapping a present and not giving it.

~William Arthur Ward 

365 days

2008-10-07T19:47:00.015-05:00

365 days. As of last night at 11:55 pm Sophie has been in heaven for 365 days. For me, it's been 365 days of longing to hold Sophie, to rub her back, to smell her hair. I miss her so much, more than I can explain. At times the pain of having a broken heart is unbearable, but other times I will read a card or a email, or have a conversation where someone tells me how Sophie or our family has changed them for the better, and it makes the pain more tolerable. On one hand, I want her back with me on this Earth, but on the other hand I realize that her being in heaven -already for 365 days - makes me one blessed mother. I believe that is the best achievement one can hope for their child, and to know that Sophie is there, provides some comfort.

Yesterday was tough, I thought about Sophie every minute. I had plans of posting last night, and when I had a minute, I knew I was too emotionally spent to write anything. During the day, I played with Sarah, and during her nap, I exercised and tried and tried to distract myself with housework and organizing. As hard as I tried to suppress the sadness, there were times throughout the day where the tears would flow. We received many thoughtful cards and many beautiful bouquets of flowers, and as wonderful as they were, I was reminded again of the days after Sophie's death because that was the last time we had received so many cards and multiple bouquets of flowers. But likewise I was reminded of the love from our friends and family; and so we say thank you to those of you who sent cards, flowers, or email messages. Your support continues to provide us comfort and means more than you know.

My fellow "women of faith" in Cincinnati had a memorial mass for Sophie at IHM at noon on Monday. It may seem strange, but during that time, Sarah and I were completely consumed playing and before I knew it we had missed lunch. It must have been their praying that kept my thoughts from being so focused on Sophie during that time. The picture I've included was sent to me by them; it was where they met to say the rosary at 7:00pm, surrounding the brick they sponsored on the grounds of IHM. How beautiful! Thanks ladies.

A special thank you to the Ekis Family for sending Sarah the adorable webkinz pink pony (which we named Grace) along with the gorgeous bouquet. I smiled watching Sarah playing with it, and she held on tight to it all day and night. Thank you for thinking of her on a day whose significance she doesn't know, but will come to know in the years ahead.

Another special thank you to my Mom and Kristin who planned a casual candlelit service at Sophie's grave site last night. Many weeks ago Kristin had asked me how I felt about it, and I wanted to talk to Marc before we planned anything. Well I dropped the ball, and when the subject was brought up again on Sunday, we made a quick decision to do this because we believed it would be meaningful and helpful for us to be surrounded by our family and friends while we prayed and remembered Sophie. It was planned last minute, but lovely and touching none the less. We held candles with rainbow wax catchers and we left rainbow roses at Sophie's grave. We listened to Sophie's favorite song "Women of Faith." Marc shared some moving memories of Sophie, and others in attendance offered their sentiments as well. To close the "ceremony" while the sun had set, my Mom read a poem and we listened to the song "Somewhere Over the Rainbow." As we stood there listening, two flocks of geese flew directly over our heads honking loudly. I, (and we) took it as a sign that Sophie was there with us. (I would venture to guess that at that moment, maybe one of those women of faith praying the rosary in Cincinnati was asking Sophie to give me a sign that she was there....)

As the days continue to pass, we continue to miss Sophie, and continue to wonder why. At the same time we continue to be blessed and surrounded by people who care and support us. And so we do our best to use this support and inspiration to try and make a difference in the world of pediatric brain cancer.

We currently do not have any major upcoming foundation events, but I want to ask for your support in another way. I have decided (with the support and encouragement of couple of my loyal friends) to run the Grizzlies House 5K on December 6, 2008. This event is part of the St. Jude Marathon which takes place on the St. Jude campus in Memphis, TN. I have never been a runner, so the full or half marathon was way too daunting. I figured the 5K was an attainable goal, and a way for me to give back to the amazing facility that cared for Sophie after her diagnosis. I registered for the event and to be a "St. Jude Hero" with the intent of setting up a fundraising web page. However, when I was told that only 85% of the money raised goes to St. Jude, I decided to go about fundraising using this blog and paper mail communications instead of using the website. I'm hoping that we can set up a "fundraising update" on Sophie's web page where we can inform our supporters of our efforts.

I'm asking you to consider sponsoring me in my efforts. All of the money that I raise for this event will go directly to St. Jude. Any amount that you can send will be appreciated by me, and helpful to the families and kids of St. Jude. I've tried not to think too much about how I will feel being back in Memphis and at St. Jude. Obviously the last time I was there, Sophie was with me, she was showing signs of progression and we had received the news that her MRI showed enhancement. We were making the most of every day we had with Sophie and those days are so clear in my mind. I know it will surely be an emotional trip, but I also know that God will continue to give me the strength I need to get through the week end with more smiles than tears. I'm counting on you to give me the financial support that I need to make my effort worthwhile and beneficial to St. Jude

If you feel called to support me, please make checks payable to St. Jude, and send them directly to me so that I can track these efforts. My address is 31722 Leeward Ct. Avon Lake, OH 44012. I thank you in advance.

Marc and I were really hoping to have the Smiles For Sophie Forever board of directors in place by now. It was our hope that we would currently be in a position to provide financial support to families that are batting pediatric brain cancer. We have funds available, but unfortunately we are still working to create our board. We will wait to post our "application for help" to Sophie's blog until after our board is formed. More details will be coming in the very near future.

Although we haven't given any money directly to families yet, we have, in honor of Sophie's 365th day in heaven, made a $5000 donation from the foundation directly to St. Jude - as a way of fulfilling a part of our foundation's mission. So we thank those of you who have supported us financially making this donation possible.

While I am saying thanks, I want to thank those of you who came to the 2nd Annual Family Fall Festival that was held this past Saturday. Sophie provided us with another beautiful day and the smiling faces of the kids as they participated in the activities made me feel so proud of the work that the dedicated planning committed did to pull the day together. It truly was awesome. I can honestly say that every activity there was something that Sophie would have enjoyed, and that inspires me.

So I thank the girls who worked countless hours planning (you know who you are) =) and their families for their help. I also thank Holy Spirit for once again allowing us to use their great facility, the volunteers who helped staff the event, the vendors, the local businesses who donated their goods, the performers, the sponsors, the K of C, the pony owners and preschools for all their help. I feel as though I am forgetting to mention someone, and once I realize who, I will post again! The event raised over $4000 for the foundation and we are so grateful.

Reflecting on the past 365 days, I hold tight to the promise that God is with us always. If you told me 10 years ago that I would have lived through what I have in the past 2 years I wouldn't have believed you. The day Sophie died, a part of me died too. I honestly felt like there was no way I could live without her. But still, here I am still living without her 365 days later. When I stop to wonder how I am surviving, it is clear to me that it is something I am only capable of because I know and love God and am confident of His plan and of His love.

We thank you for your support and prayers on this first anniversary of Sophie being in the arms of God.

We pray for you that you may feel the love that we feel in some way or another. Kiss and hug those little ones in your life, because life goes way too fast, and you never know what tomorrow might bring.

Sophie,

I miss you, I love you. You are an inspiration to me and you will be with me forever. Daddy says, "You're awesome, you're the best." Shine on little star.

xoxo

Mommy

Please Read and Share with Everyone

2008-10-01T10:00:00.005-05:00

Today is October 1st. And the first day of Breast Cancer Awareness Month. I was reminded of this on the Today show this morning. I needed this push to post the following letter that was written by a mother whose son is currently battling the same tumor Sophie was this same time last year. She wrote it at the end of September and I've been meaning to share it with all of you.

This family lives in Michigan, and the mother, Sandy, who is a member of the DIPG Yahoo Group, received her breast cancer diagnosis just before her son's diagnosis almost a year ago. I post this because last month was Childhood Cancer Awareness Month, yet I saw no national coverage. It is so disheartening because right now childhood cancer is grossly underfunded when compared to other types of cancer. We need to increase funding, and equally important, increase the awareness of childhood cancer.

You can read her letter at www.justonemoreday.org

It is on the home page, just under the gold ribbon. (I tried and tired to paste this directly into the blog, but I haven't had success.) Please take the time to go to this site and read her moving story.

I encourage you to share this with anyone and everyone you know. Childhood cancer stinks. There is nothing worse. I wouldn't wish this on anybody and I can only hope that one day our children will have more hope for a cure. Especially children with Sophie's diagnosis, where the current survival rate is less than 1%.

On a happier note, our Family Fall Festival will be held this Saturday at Holy Spirit Church in Avon Lake from 11-4. The planning committee has been working very hard to plan this day. There are so many cool activities planned, and the minimum donation is only $10 per child. There will be pony rides, multiple bounce houses, performances, a hay climb, loads of crafts, face painting, hair glitter, cookie decorating, food, drinks and bake goods for sale, and even vendors selling their goods. Of course we will also have the Smiles For Sophie Forever items available for purchase so you can help us raise awareness about pediatric brain cancer.

The weather is supposed to be "fall perfect". We would love for you to bring your kids out to join us for a fun filled day. Last year, this was Sophie's last real "fun" outing, and I remember how much we could tell she loved it...even though she could no longer talk or smile. I hope you take this opportunity to make some happy memories with the little ones in your life. You never know what tomorrow brings so make the most of the opportunities you are given.

God Bless you all.

Childhood Cancer Awareness Day is this Saturday

2008-09-11T12:34:00.002-05:00

According to the American Cancer Society, more than 10,700 new cases of cancer will be diagnosed in children under age 15 this year. And while rare, cancer is the second leading cause of death in children, exceeded only by accidents.

We know how deadly this cancer is. We know that it can happen to anyone, because it happened to us. For us, we focus on pediatric brain cancer, as diffuse intrinsic pontine glioma is one we are all too familiar with. On this national day of awareness we ask that you take a minute to do something that might help lead to a cure.

You could write a letter to a Congressperson asking for research funds. You could make a donation to an organization (like Smiles For Sophie Forever, or St. Jude) that is committed to curing cancer. You could raise awareness by telling just one person about Sophie and/or all the other children afflicted with cancer. And most importantly, you could say a prayer for the children battling cancer.

We also ask you to take a minute to give thanks for the healthy children in your life. Look them into their eyes, hug them, kiss them, tell them you love them. Let them know there is nothing you wouldn't do for them. Tell them you will be with them and there for them no matter what. We learned first hand how precious life is, and how cancer changes everything. As parents we want to fix things, and make things better. However, cancer is often times something that cannot be fixed.

As it is with life, one person can't do everything, but everyone can do something. Please do something to recognize National Childhood Cancer Awareness day, this Saturday September 13, 2008.

God Bless.

Almost a Year...

2008-09-02T22:16:00.019-05:00

I can't believe it has been 11 months since we lost Sophie's physical presence. The next time that the 6th of the month rolls around, it will have been one year. One year. That sounds so long.

I can't believe it. I want the days to stop going by.

I want to go back to last year. Will the pain ever go away?

Will I ever not feel angry when I hear a mother or father "yell" or raise their voice at their child, because I long to tell them how blessed they are that their child is still with them? Will I ever stop feeling guilty because I couldn't do anything to help Sophie? Will I ever have a restful night's sleep? Will I, will I, will I...

These are the questions that continue to flood my mind as I try to deal with the grief of losing Sophie. I don't want another family to ask the questions I ask. Recently I joined the Yahoo DIPG group. Somehow I hope to be able to help other families fighting this battle, and once we have our application process finalized, it will be a great way to communicate our support to families. However, the contact that I have had with the families currently faced with a DIPG diagnosis, makes me so sad. I feel so helpless because most of the parents are in the same shoes we were in 2007. They are searching for answers and there are none. They are asking questions to doctors, and to themselves, and there are no answers that can help them. They are becoming all too familiar with words and phrases like , protocols, medi - ports, blood counts, palliative care, relapse, steroids, clinical trials, withdrawals, MRIs, sedation, NPO, and so on and so on. I feel their pain in such a deep way and I long to do something; something, so one day they won't feel how we feel every day.

I've been getting out the Rubbermaid tubs to make the change from summer clothes to winter clothes in Sarah's closet. These "jobs" that I have, bring back so many memories as I pull out each outfit that Sophie used to wear, and I can vividly remember a specific time that she wore it. Sarah is reminding us more and more of Sophie each day. So many people tell us how much she looks like Sophie, and her personality is similar as well. She is very shy around new people, which is how Sophie always was. She repeats old sayings that I used to say with Sophie, and she sounds just like her. The other day she was out with Marc and she called me on the phone. I couldn't believe how much she sounded like Sophie. I instantly thought of the time when Sophie was two, and she and Marc called me while I was out running errands. I sang "Twinkle Twinkle" to her the entire drive home, and when I walked into the house and upstairs, she was falling asleep in Marc's arms as I sang.

Sarah plays with Sophie's old toys, and begs to watch video after video in Sophie's Dora collection. While Sophie was sick, TV was what she loved, and I believe she collected over 30 Dora DVDs during that time. I remember which ones she liked the best and how she would sing along to the songs. I hate that Sophie is not here to play with Sarah. I can't even begin to imagine the fun they would have with each other.

The other day I needed a box to mail a package, and the biggest one I could find in my stash was one addressed to "Ms. Sophie Quayle". I had saved it from last year after Sophie received a collection of toys in the mail. Those little things are so hard. And they happen all the time...each one as hard as the last.

So I can't say it gets easier. The grief is a part of me. Something I will always have. Some days I handle it better than others, but it's hard to explain , or to understand unless you've experienced this loss.

We continue on with the foundation channeling our grief in a way to somehow, someday help families and find a cure.

We want to thank our supporters who came out to the golf outing in Grand Blanc Michigan on August 18. It was a gorgeous day, and everyone had fun. We gave Smiles For Sophie Forever bracelets to each of the participants, and it was touching to see so many men (and women) wearing their pink bracelet at the end of the day. It means so much to see people showing us their support by wearing their bracelets. We notice them, and it lets us know you are still with us in this journey, 18 months later. Thanks to Marc's Mom Kathy, and Dad Bob, and brother Brett and sister-in-law Amy for planning and organizing this event.

Michelle Redfearn and Chris from Deluca's Place in the Park, hosted a delicious steak fry for the foundation on Saturday August 30th. Thank you Michelle. The steaks were delicious and the company was great. Thank you to those of you who were able to attend. We are so excited that Deluca's will be the location for our winter 2009 fundraiser. More details will be coming soon.

Tamara and Brian Ekis and their boys Colin and Garrett (parents and brothers of Grace Ekis) made the drive from Pittsburgh for the steak fry! It was great to see them and refreshing to talk to a family who honestly understands. Tamara was able to share Grace's story with some of the people in attendance, and I think it helped show that these are real girls, real daughters, who were once here, but who were taken from this Earth after their battles with DIPG. They are such a nice family and one I wished we could have met in a "normal" situation. Their boys were so great, and Sarah had fun with them! I mentioned earlier how shy our Sarah is becoming, but the Ekis boys won her over with no efforts. I was impressed, as I didn't know how Sarah would react to teenage boys. She was laughing and tickling them, and they were tickling her. It was sweet to see. I know they were great big brothers to Grace.

We are in full swing with the planning of the 2nd Annual Fall Festival here in Avon Lake, OH.

A full day is planned with a wide variety of crafts, activities and performances available for children age 2 and up. Admission for each child is only $10.00 and the event runs from 11-4. There will be food for sale, and a number of vendors on hand to sell their creations. We will also be a feature in the Avon Lake homecoming parade to be held just prior to the start of the festival. If you would like more information, or would like to volunteer, sponsor, or sign up as a vendor to sell, please contact Elizabeth Gedeon at gedeon4@oh.rr.com.

We are also still selling the Macy's Shop For A Cause coupons. Please see the Smiles For Sophie Forever website for more information. If you are willing to sell these coupons to your friends, family and/or co-workers, we can send you some to sell. They are only $5.00 and entitle you to 10% or 20% off your purchases (some exclusions apply) all day September 20th at any Macy's across the country! ALL the proceeds go to our foundation. Macy's will not have their usual 15% off coupons in the paper that week end. Please contact us for more information.

I sat and watched Stand Up to Cancer on Friday night. I thought there was some very important information included about how we are all affected by cancer in some way. Obviously some of us are more closely affected than others. I did think that not enough was said about cancers (like DIPG) for which there has been NO progress. Hopefully some of the millions of dollars that was raised will be allocated for pediatric brain cancers. I was thinking how valuable it would be to DIPG research if we could find someone of celebrity status to promote our cause. So many people still have not heard of DIPG and it's grim prognosis. We need to hear about it as much as we hear about other forms of cancer so that some progress can be made. Unfortunately TV and radio time is expensive, and hard to come by. One day when I feel like I have a handle on the logistics of running a foundation, I will spend some time contacting celebrities, asking them for their help.

I realize that we have many people who follow our website from the Cincinnati, Ohio area, and so I thought I would share with you an opportunity to help raise funds for pediatric brain cancer. Ironically enough, they was a little girl named Sophie who was from the Cincinnati area and died of a different type of rare brain tumor. Her family is holding it's second "Sophie's Angel Run" on Sunday, September 28 at 1:00 in Bridgetown, Ohio. Also, ironic is the starting location of the race - St. Jude Church in Bridgetown, OH. You can visit their web site to read more and to register for the event. It is www.sophiesangelrun.org. The Meinhardt family drove up here to Avon Lake for our race on July 4th, and we will be heading down to support them in their endeavor. It would be great to see some of our old friends from Cincinnati at the event.

Well, we continue on in this journey, reflecting on where we have traveled the past two years. We have had our share of obstacles, which have come and gone, but the one thing that has remained is our faith in God, and the support of our family and friends; for that we are forever thankful.

Below is a youtube link to a slideshow of the race. I'm disappointed with how it turned out because it is so blurry. Somewhere in converting the format, we lost a lot of detail. Never-the-less, some of the pictures are cute. One day, I will fix it. One day...

I saw this somewhere, and I thought it was worth sharing.

"God, please give me patience to deal with my blessings."

God Bless you all.

Steak Fry!!

2008-08-21T18:34:00.007-05:00

You’re Invited!!

What: Steak Fry for Smiles For Sophie Forever

Catered by Deluca’s Place in the Park
There will be kids activities too: bounce house, games, etc

When: August 30, 2008 at 3:00 p.m.

Where: Michelle Redfearn’s
2821 North Hayes (Centennial Park off Detroit)

Avon, OH

Cost/Donation: $25 per person includes (proceeds to benefit SFSF):
14oz strip steak, baked potato, salad, roll, and beer

$5 kids option: hot dog, chips, and drinks

Deadline: Headcount and payment needed by Thursday, August 28th

Please mail checks to:
Smiles For Sophie Forever
31722 Leeward Court
Avon Lake, OH 44012

Feel free to pass this invitation on to family and friends!!

For more information, please contact Michelle at redfearn_michelle@yahoo.com

Time Marches On

2008-08-13T21:49:00.013-05:00

I feel like I start each post apologizing for not updating sooner. The 6th of August came and went and I couldn't update. As always, I have been meaning to. Usually my excuse is time, but this month when I sat down to write, my thoughts were those of despair and sadness so I have been putting off writing.

We're approaching the one year anniversary of Sophie's death. I cannot believe how fast time goes by. I still say it seems like I haven't seen Sophie in many years, while at the same time I remember every detail about her as though she was just here. This time last year was not a good time, as Sophie's cancer was progressing fast and she seemed so helpless most of the time. Labor Day was the last time I heard her voice. It was very slurred and hard to understand, but at least she was talking. Then one day she woke up and could make no sound. Thinking back to those times pains me because I still wonder and wonder about how scared she was.

It still is not getting any easier. I long for her, to hug her, to smell her, to hear her. Many times I hold the nightgown that she was wearing when she died close to my face. I used to be able to smell that and feel close to her, but after 10 months, the "Sophie smell" is going away and all I have left is the nightgown. They tell us that grief is a process and that it takes time to heal. I don't know if I believe that. Right now, time is doing nothing but making me miss her more and more.

I got a post card in the mail from Bob Evans. Sophie was part of the birthday club. It was wishing her a happy birthday and said to bring the postcard in for a free kids meal. That was really hard to receive. It symbolizes how life goes on for everyone else, but my world without Sophie stands still.

It's hard to come to terms with the fact that this fall would have been such a big year for her. Sophie would have been starting kindergarten and she was so excited to ride a bus to school.

Earlier this week the Avon Lake Early Childhood PTA was having an ice cream social. I went thinking I would be okay. I knew it was going to be at the "Lake House" which is where the picnic was that we all went to the day Sophie died. I had never been in that building before the picnic, and obviously hadn't been in there since. That building was the last place Sophie went, and it was where she ate her last meal. I had to get out of there before the sadness overwhelmed me. It's those things that I can't imagine not feeling or "getting over" one day.

I was driving with Sarah in the car this evening and I told her to look out at the pink, red beautiful sky and sunset. I then said "Sophie did that." I know that is something hard for a two year old to understand, but we talk about Sophie all the time, so I didn't think it would be a big deal. Sarah said to me "Fofie, heben. Come here now." And then she started crying saying, "Mommy call Fofie, Mommy call Fofie, come here now, no heben, no Jesus." I was so sad. Sarah wanted to see Sophie and of course I couldn't explain why she just couldn't "come here now". I think about how much fun those two girls would be having and I'm saddened by the loss in Sarah's life, especially because it seem like she is finally starting to realize that "Fofie" once really was here.

Many of you know of my pregnancy that ended at 15 weeks in the beginning of June. I didn't mention this on the blog before because I am not one to try and bring more attention to myself, but I bring this up because I realized that so many of you were so kind to me and sent such nice cards and showed your support. I feel like I never thanked many of you for your support during yet another difficult time. I told Marc not many people have 3 children in heaven like we do. (I miscarried a baby at 12 weeks when Sophie was just 7 months old.) When I feel sad, I pray to those little saints and ask them for guidance. I know that Sophie is an amazing big sister to those in heaven with her, and that makes me smile.

And when I'm feeling sad, I remind myself how blessed I am to have my family and so many caring friends in my life. One time my sister said to me, "you've met some awesome people in Ohio" and it's true we really have. I know that surviving this ordeal would be a lot more difficult without people who surround us with their love, and for that I am thankful. So, it's not all doom and gloom here.

We are excited to announce the 2nd Annual Fall Family Festival that will be held here in Avon Lake on October 4. Please click on "Fall Festival" under Upcoming Events on the website to read more about it. Some amazing girls are putting this together in record time, and it is sure to be loads of fun for the kids. I remember how much Sophie liked it last year. Even though she could not longer talk, eat, smile or support her body weight, I will never forget when my Mom told me, "I could tell Sophie was smiling by looking in her eye."

Within the next week or so, we will be selling 20% off coupons for Macy's. They have an event called "Shop for a Cause" and this year the Smiles For Sophie Foundation will be participating. It is really easy. All you do is buy a shopping pass from us for $5.00 and we will give you the pass to use at any Macy's in the country and you will receive 20% off your purchase all day. Macy's will be having some raffles and prizes of their own at each store. It's a quick way to donate to our foundation and get something back in return. Amy Schmidt will be heading up this fundraiser. She will be accepting cash or checks for payment. If you would like to purchase a shopping pass, or if you would like to help sell passes, please contact her at schmidthouse5@oh.rr.com or 440-930-2447. (Please see the SFSF website for more information.)

I've been working on putting a slide show together with pictures from the race. So many generous people have given me CDs with hundreds of pictures on them. I am trying to wean out duplicates and put them in some sort of organized fashion. When I do, I will post them on the website, or on this blog.

We still have race t-shirts available for $5. We ordered a few more because many people said they wanted one. Some people have actually purchased them, but we haven't heard from some of the others. So, if you want a t-shirt from the inaugural Sophie race, please email or call Kristin at pkvaneuwen@oh.rr.com or 440-781-1179.

Thank you all for your continued support and prayers.

2008 Race T-shirts!

2008-07-25T09:32:00.002-05:00

We know there were many people who registered late or who just came for the after race activities, and didn't get a t-shirt, but were interested in one, for themselves or for friends. Well, we ordered more!!

At this point, we have talked to or left messages for all those who were actually on our list for t-shirts, however, not all of those are still interested. So, that means there are t-shirts available for anybody...first come, first serve!!

The t-shirts are available for a minimum $5.00 donation and there are still a variety of sizes left, except XXL. If you are interested in a t-shirt from our first annual Smiles For Sophie Forever 5K Run/1 Mile Walk, please contact Kristin Van Euwen at pkvaneuwen@oh.rr.com or 440-781-1179.

Thanks so much for your support!!

Love,
Sarah

Happy Birthday Sophie!!!!!

2008-07-05T21:20:00.007-05:00

Wow is all I can say! For those of you who weren't with us on Friday to remember our little girl, I want to take a moment to tell you how awesome the event was.

The weather was perfect, and over a thousand people of all ages came together to run, walk, eat, and/or play in honor of our Sophie who would have and should have turned five that day. We don't have the exact amount, but it is safe to say that close to $50,000 was raised through the dedication of so many different people. It truly was amazing, and we couldn't have asked for a better way to kick off our Smiles For Sophie Forever fundraising efforts. Equally important was the fact that the children in attendance had fun. That makes me smile, because I know that is something that Sophie would have wanted. She loved birthdays, parties and decorations. The fact that we raised money for our cause and had fun doing it is what we want our foundation to be known for.

Our next step now, is to develop our application process so that we can begin providing financial support to those families fighting the battle we fought. Our plans are to form a board of directors so that we may collectively decide what families and organizations will be given money so that we may fulfill the mission of Smiles For Sophie Forever.

We want to express our gratitude to the many people who have helped us these last few months to get the foundation off the ground and plan our maiden fundraiser, but most importantly we want to thank God for giving us the strength to continue on this journey by giving us the support of our family, friends, and even strangers. When I stopped periodically throughout the day to reflect on just how awesome it was, all I could think about was how inspiring it is to see the good in so many people.

There are so many people we have to thank, some we know, and others we don't. I am including below the "thank you" that we wrote for the race program, as a way to express the gratitude we feel.

We wish we could say a personal “thank you” to each and every one of you who made today’s event possible. We know we could never have pulled this off without the dedication, love, and support of so many. Nor would it have been successful without all you runners, walkers and children who made this event part of your 4th of July celebration. Thank you to all of our supporters.

We would also like to thank our family and friends, who supported us from the beginning, when the thoughts of this event were still just forming in our heads, and who continued to support us throughout the months leading up to today. We are grateful to all of the volunteers who made sacrifices to attend the planning meetings, made phone calls and wrote letters on our behalf, and worked on the various race planning committees, as well as those who worked today.

We’d like to say a special thank you to Kristin Van Euwen, who stepped up to the plate and volunteered to be the race director/event coordinator. Since this is our first annual run/walk, it sure did take a lot to make it happen! Kristin, and her husband Pete, who diligently worked on the legal paperwork to make us an official non-profit organization, have been dedicated from the get-go. We certainly would not be here today without all their hard work.

Finally, we express our gratitude to all of you who took the time to create a fundraising page through activegiving.com. We appreciate your dedication to our cause and your efforts to solicit donations from your families and friends. We were astounded by the response this year, and next year hope to meet our goal of $50,000. We are also grateful to those of you who made personal financial contributions to the foundation. We cannot wait to begin awarding this money to families and research facilities in an effort to fulfill our mission.

Today’s event was more than we had imagined and we owe it to all of you. Thank you from the bottom of our hearts. We know Sophie is smiling down on us all from her special place in Heaven!

In addition to the race and the kids activities, we had some special touches that completed the day. We sang "Happy Birthday" to Sophie before the race. I know Sophie heard us loud and clear, and I know she was smiling when she heard Daddy singing in the microphone!

Some local florists donated colorful carnations that a few volunteer girl scouts passed out to the runners and walkers before the race. The race course went past our house, and we asked the participants to drop their flowers on our grass as a memorial to Sophie. Over 500 flowers were placed on our lawn and it was beautiful. (My Mom, Dad, and sister and I took the carnations to the cemetery and placed them in front of Sophie's headstone.)

There was also a group of local high school students who came together to play their instruments in our driveway as the runners and walkers passed. I wasn't there to hear them, but have heard from many people how great they sounded. After the race, the participants were invited to enjoy a cupcake from a couple local bakeries who donated them. There was a DJ, a ton of activities for kids, and food for sale. It was quite a sight as we came together to "race towards FREEDOM from pediatric brain cancer." All in all it was a huge success, and I've heard great things about the event from many people.

This is a link to a short video recap of the day's events created by my friend Andrea. I was told that it took over 4 minutes for all the participants to cross the start line. Pretty unbelievable for a first time event.
http://app.talkfusion.com/talkFusionStudio/view.asp?221888_1827609

I know there are many of you who like to keep on giving and making a difference. We have the perfect way for you to do so. If you haven't already registered for the Prayers From Maria Foundation 5K and 1 Mile that will be on July 12 in Bay Village, you can still come to the event and register that day and continue to raise money to find a cure. You will find more information on the www.prayersfrommaria.org website. Hope to see you there!

A friend of mine sent me a card saying that Sophie was like the sparkler she would light on the 4th of July...a beautiful light enjoyed by all who see it, but a light that would be gone all too soon. I couldn't agree more, and I am grateful to those of you who sent us cards and emails wishing us peace on Sophie's birthday. It is comforting to know that we are loved and thought of by so many.

I have to say that Sophie's birthday ranks up there in the "hard days" category, even though every day is a hard day when you've lost a child. I was able to put on a strong face for the day, and the business was a needed distraction, but as always, the quiet moments alone were the most difficult. I'm grateful for all that has been done in Sophie's honor, but I must admit, I'd trade it all in a heartbeat if I could have my little girl back.

Sophie I know you were with us yesterday as we celebrated your birthday even though we couldn't "see" your beautiful face. I could feel you and see you in the faces of so many wonderful people. Your birthday celebration was awesome, and the only thing that could have made it better was having you there with us.

So many people came together because of YOU. You are the reason that people feel compelled to give, compelled to do something to find a cure and to help other families. Happy birthday sweet Sophie Girl. I love you, I miss you, yet I find some comfort knowing that your 1st birthday celebration in Heaven was even better than the one we had here, so it sure must have been something spectacular!

Updated race information!

2008-06-30T11:05:00.007-05:00

Hi everybody!

Kristin, the race director, sent out this information via the Active email option, however we don't think everybody got the email. So, we're posting this information here as well, so hopefully everybody will get it.

We are so excited about the awesome turn-out and we can't wait until Friday! See you there!!

Love,
Sarah

Early Packet Pick-up:
(We will take late registrations during these times too with an entry fee of $25.)

Wednesday, July 2, 2008, 6-8 p.m.
Dairy Queen
33720 Walker Rd
Avon Lake, OH 44012

Thursday, July 3, 2008, 12-2 p.m.
Swingos Grand Tavern
32858 Walker Rd
Avon Lake, OH 44012

If you are unable to pick up your race materials early, pre-registration check-in will be from 8-8:45 a.m. on July 4, 2008. We will also be taking race day registrations during that time, for an entry fee of $25.

Parking:

If you live in the surrounding neighborhoods, we encourage you to save gas money and walk or ride your bike over to the park. There are approximately 200 parking spaces for use at Walker Road Park. At 8:45 a.m. or when the Walker Road Park lot is full (whichever come first), the lot will be closed. Holy Spirit Catholic Church (410 Lear Rd, Avon Lake, OH 44012) has graciously allowed us to use their parking lot. Avon Lake City Schools has donated a bus and driver to shuttle racers to and from Walker Road Park. The shuttle will run from Holy Spirit to Walker Road Park from 7:30 a.m. until 12:15 p.m. The bus will not run from 9-10 a.m.

Kids Activities:

Just a friendly reminder that all children participating in the activities after the race must make a donation and have a waiver signed. If the child is registered for the race, the wristband is included, but we still need a signed waiver. We have many exciting activities planned: bounce house, animals from the Lake Erie Nature and Science Center and Columbus Zoo, face painting, sand box, cotton candy and snow cones, just to name a few! Hot dogs and drinks will be for sale for a small fee.

Door Prizes:

Carefully check out your goodie bags to see if it contains a winning door prize postcard! All prizes will be distributed on race day. We will be giving away some of the following items:

2-month Curves membership, Cleveland Browns gift package, gift certificates to: Winking Lizard, Playground World, First Watch, Copper Cup, Ironwood Cafe, El Metate, Rush Inn, and Absolute Dance, overnight stays at: Holiday Inn Select City Centre, Sheraton Suites Cuyahoga Falls and Crown Plaza Cleveland City Centre, Cleveland Indians tickets, a NASCAR lunchbox with Stewarts Electronics gift certificate, a spa package at Brown Aveda Institute, Agave gift card, 1-year subscription to Travel & Leisure and Food & Wine, Cleveland Zoo tickets, Cleveland Orchestra tickets, Ipod, autographed Z Cavaliers jersey, Cherished Teddies figurine and watch set, Dr Seuss books and stuffed animals, a custom decorated cake from Crazy Cakes and even more!

Hotel deadlines

2008-06-15T11:13:00.004-05:00

Hi everybody!!

This is just a reminder that the hotel room blocks that we have set aside will be released this week. So, if you are planning on participating in the events on July 4 and think you will want to stay overnight, please call one of the two hotels ASAP. The hotel information is on Sophie's website on the events page...scroll down towards the bottom for locations and phone numbers.

The two hotels are:
Courtyard Marriott (JULY 3 ONLY): rooms need to be booked by JUNE 19
Hampton Inn (JULY 3 and 4): rooms need to be booked by JUNE 18

There are of course other hotels in the area, but these are two of the closest that had some availability and were willing to give us a discounted rate.

Thanks so much to everyone that has registered and/or donated! For those of you that haven't...you still have time!! Please visit http://www.smilesforsophieforever.org/ to register and/or donate!!

Love,
Sarah

Happy Anniversary?

2008-06-06T18:40:00.007-05:00

Well the 6th of each month is normally a day I dread. I start thinking about it the night before and continue to think about it throughout the day. I hate that time keeps on going without Sophie. I long to be able to go back in time and change the course of events. I know I can't so the 6th of the month is often even more heartbreaking than all the other days when my heart aches of missing Sophie, and I replay the events of the day she died, which was now 8 months ago.

Today is different. Today I miss her as much (if not more) than I always do. Today though, I long to give her a hug and say thanks...why? Because I am so excited to say that just today we received the letter from the IRS stating our foundation paperwork has been approved, and we are now an "official" non-profit foundation!!!!! I know Sophie had something to do with us receiving this news today. We are more than excited. So in a way, today is a "Happy Anniversary." We owe a HUGE thank you to Peter VanEuwen, the attorney (and friend) who provided us the necessary help and guidance to get the paperwork submitted correctly, and in a timely manner. We are so blessed and grateful to know Peter. Without him, we might very well still be spinning our wheels, knee-deep in confusing paperwork!

The planning for our race is coming along great! We realize we have less than a month until the big day, and there is still work to be done, but with all the effort from so very many willing volunteers, we know it is going to be awesome!

In addition to the race (run and walk) we will be having some kids activities to entertain the little ones after the race. Our "activities committee" has been working hard at planning some fun things for the kids to do, and here are just a few of them: animals from the nature center, face painting, balloon art, magic shows, cotton candy machines, snow cone machines, the Life Flight helicopter, a giant bounce house, birthday cupcakes, and more!! All of this will be available to children who make a donation to the foundation in exchange for a wristband. Parents must accompany their child(ren) so that a waiver can be signed before the activities begin. For those children who have registered for the walk, or run, the wristband will be provided as part of the registration fee, but the additional waiver will still need to be signed on race day.

Those who have pre-registered for the event (those received prior to June 27) will receive a goodie bag, t-shirt, birthday cake, water, fruit, bagels, and 2 entries to the live drawing which will be held after the race. So far we have some cool things to give away, and I will update the blog in the next few days, once all the items have been collected. Here is a sneak peak: gift certificates to local restaurants and stores, gift baskets, tickets to an Indians game and more!

Those who register between from June 28 and July 4 will pay an additional $5, and unfortunately, we cannot guarantee the perks of "pre-registration" to those who enter after June 27.

There will be a DJ to provide music, as well as live music from some talented local high school students. We also will have fresh squeezed lemonade and jumbo grilled hotdogs for sale, in addition to our "Smiles for Sophie Forever" car magnets and headbands.

Today, with the help of so many people dedicated to our cause, combined with our activegiving.com campaign, we have raised over $10,000 for the event. Our goal is $50,000 and to some, that seems crazy, but we set that goal with the motto "Shoot for the moon. If you miss, you will land among the stars." in mind. We still have time to raise additional funds, so if you feel called to do so, please visit http://www.active.com/donate/SmilesForSophie

In the works are some incentive prizes for individuals and/or teams who have achieved various fundraising goals.

Each member of a team, or individual who meets the following amounts, will be entered into a drawing for the prizes listed below. And they are pretty cool prizes! These are just some of the things we have so far, and more may be added as we receive them.

Fundraisers raising $2000.00 or more will be entered into each of the following drawings:

1. a Columbus Zoo family entertainment pack for 7 including a behind the scenes tour of the Jack Hannah Animal Promotions Complex valued over $1000.00
2. steak and lobster dinner for 8 prepared at your home by the chef from Delucas in the Park valued at $1000.00

Fundraisers raising at least $1000.00 will be entered into the following drawings:

1. 4 Indians club seat tickets valued at $440
2. a one night stay for two with breakfast at the Marriott Cleveland East

Fundraisers raising at least $750.00 will be entered into the following drawings:
1. Charles Scott Salon and spa $125 gift certificate

2. Little Gym of Avon Birthday party gift certificate valued at $225
3. I-Pod Nano with case

Fundraisers raising at least $500.00 will be entered into the following drawings:

1. an overnight stay for 2 with breakfast at the Cleveland Hampton Inn
2. one of 2 Sony mp3 players
3. one of 2 $100.00 Little Gym of Avon gift certificates
4. autographed Victor Martinez baseball

If you haven't set up an active giving fundraising page, you still have time, and your support will mean so much. If you need help creating, customizing, or updating your page, feel free to contact my sister Sarah at smiklaski@cox.net. She will be glad to help.

Our next planning meeting will be held at Swingos Grand Tavern in Avon Lake on Tuesday June 17, at 7:00. If you have ideas to share, all are welcome as we put all the final details into place.

If you are interested in helping the day of the event, please contact pkvaneuwen@oh.rr.com . We are in need of many volunteers, and would love your help. If you are volunteering, you can still participate in the event if you wish to do so.

More information will be coming soon regarding early packet pick-up.

Thank you to all of you who have continued to send thoughts and prayers our way. Please take a minute to pray for the families who are fighting the battle of pediatric brain cancer this very moment.

With your continued help, and support, we hope one day, the battle for these families will be a victorious one. We cannot wait to begin allocating the Smiles for Sophie Forever funds to families fighting this battle, as well as organizations like St. Jude who are working to find a cure for pediatric brain tumors.

Thank you again to all our supporters. God Bless you all.

How long is 7 and a half months?

2008-05-12T23:25:00.002-05:00

I know today is not a "significant" date as far as milestones go for living without Sophie. This month I had decided not to post on the 7 month anniversary just because I wanted to wait until it had been 7 and a half months, as a reminder of how short 7 and a half months is, and that Sophie only lived 7 and a half months after being diagnosed. (Obviously it hasn't quite been 7.5 months just yet, but I wanted to post anyway.) Many people say to me that they can't believe she's been gone 7 months already; like the time has gone so fast. There are times when it seems that way to me. But for the most part, I feel it, and remember it like yesterday.

Think back to what you or your loved ones were doing on October 6, 2007. If you, or your loved ones were given Sophie's diagnosis on a day in your "normal lives" of October 6, today you/they would be suffering like Sophie, and would be on your death bed paralyzed in every physical sense, and about to take your last breaths. Most of us can't even remember what we were doing 7 and a half months ago. But a DIPG diagnosis changes that. You count every day. Not wanting to get to the 9-12 months past diagnosis knowing that the end may be near. Then suddenly you take a turn for the worst, and then you are gone. That is what DIPGs do, and that is why a cure needs to be found. Everyday I remind myself that 4 years, 3 months, and 2 days is WAY too short of a life time. My prayer is always that something good might come from Sophie's pain and suffering. Right now, we focus our efforts on the foundation, easing the burden on other families and raising money to search for the cure.

I want to say thank you to all of you who commented to my last post describing Sophie's last moments with us. From all the comments and emails, I realized just how touched so many people were. Many people have commented that it made them more aware, more appreciative, more dedicated to the cause. When I write these posts, I do so with the goal of having something good come out of it. I don't do it as therapy for me. I don't do it so people we feel sorry for us. I do it to educate the people about the disease that took Sophie's life, and to encourage people to listen to the calling to help try to save another child's life. I thank those of you who show us your support by responding to the blog and encouraging us to continue to share the deep emotions that make this storm so real to the many of you who admittedly say you can't even begin to imagine living this nightmare. And we also want to say thank you to those of you who have made positive comments about the new site. Just the other day, a friend of mine, said she sometimes goes to the site just to listen to the song and look at the pictures of Sophie. Again, we are honored that you take the time to comment.

Race planning is coming along. Soon I hope to post all the details for the kids activities as well as some of the door prizes and fundraising incentives. All of our committees have been working so hard to make this an unbelievable event; not just for the runners/walkers, but also for the children. After all, it is in a sense a "birthday celebration" and I know Sophie would want the kids to have fun. We have received many race registrations, but are still looking for so many more. I wasn't surprised to see my Mom, Dad, sister and brother among the first to register. They have been there to support me through thick and thin. I was pleasantly surprised (and also very excited) to see the names of people who I haven't met registering. And I have to say I was surprised that many of you who have told me you plan on participating haven't yet registered. (You know who you are =0) and it only take a few minutes.) As Kristin and Katy's Team Fundraising page is entitled "DIPG - Don't Ignore, Please Give. I encourage you to embrace that motto and give to the cause that could one day save a life.

Magnets are still for sale on the site, for those of you who are interested in purchasing one for the cause. If you live in near my Mom in Trenton, MI, or here in Avon Lake, near me you can now purchase them directly from one of us. My sister is in the middle of a move to Washington D.C. so she has temporarily given us the supplies to manage while she gets settled.

I have to say that I have some sad news. Little Ashley Boross lost her brain cancer battle this morning. Everytime I hear of another child dying, my heart aches. It aches for the parents left to grieve, and it aches for the life lost and what could have been. Please remember Ashley and her family in your prayers.

I also have some heart warming news. My good friend Jen has a daughter, Maria, who is 3 months older than Sophie. This past month, her preschool - Red Bell - in Plymouth, Michigan held their second annual trike-a thon for St. Jude, and this year they decided to donate the money to St. Jude in Sophie's name. We were touched, and honored. The students raised $5360.00. A friend of mine once told me that she read that it costs St. Jude 1.2 million dollars to run their facility for ONE day! We know we were so blessed to receive the care for Sophie at St. Jude. We thank the owner of the preschool, its staff and these children and their families for all their efforts, and hope they fully understand how every little bit helps a family at St. Jude with a child battling cancer.

I spent last week up north at my parents cottage with Mom, Dad, sister Sarah, Baby Zach, and my little Sarah. It was nice to get away, but strange being there as it brought back so many memories of the times we spent there with Sophie. Sophie loved "grandpa's cottage" and so it was hard to be there without her. The week was a little rough, and then this Mother's Day was certainly a hard day for me. Probably the hardest "holiday" we've had. I could clearly remember every Mother's Day that I spent with Sophie, and couldn't get it out of my head that I couldn't give the little girl, who first called me Mom, a hug. I do want to say thank you to those of you who thought of me on Mother's Day. I read each and every card and email and thanked God for putting so many good people in my life. My Mom bought me a rainbow/star garden spinner that I love, and Marc's sister Leslie made a contribution to St. Jude in my name and Marc's Mom, Susan Turner, in Seattle made a contribution to Smiles For Sophie Forever. Those were the best gifts. So thank you to all of you who showed your love and support. I truly appreciate it.

While my sister was here, I took advantage of her awesome painting skills, and I helped her paint my guest room a couple crazy bright colors and then I put the rainbow comforter I found on the bed. I wanted to have a place that will always be "Sophie's Room". I ordered some quotes to put on the walls. These are the 3 I chose. I think they are all so fitting and serve of the reminders we need every day.

"The work will wait while you show the child the rainbow, but the rainbow won't wait while you do the work."

"The soul would have no rainbow if the eyes had no tears."

"Somewhere over the rainbow, way up high, there's a land that I heard of once in a lullaby."

Every time I make a post, I never intend for it to be so long. But once I start writing, I realize there are so many things I would like to share. Tonight I am too tired to even proof read, so please ignore my mistakes. I will leave you with this last story - it's a comment that we received on the blog. I know many of you read through the comments, but for those of you that don't, I thought the shoes story, and the relation to all the "shoes" we will see on race day was worth posting for everyone to read. It made me cry, as I related too well to the mother's sentiments. Pray for little Isabella.

Marc and Emily,
I don't know any other way to get an email to you, but I wanted to share a story with you that a friend of mine shared in her blog. Monica Battle's 2 year old daughter, Isabella, has leukemia. They've been fighting since December 2007. I've kept up with Sophie's blog since the beginning and I'm keeping up with Isabella's. Monica shared a story in her latest that I think would resonate with you, especially Emily. I find that her observations and attention to detail match yours (you once talked about taking a walk and noticing a leaf or pinecone that Sophie would've liked or picked up, I remember that fine detail in your writing). And after you read this post I hope that you take a look at Sophie's shoes and thank the Lord that he blessed you with her, a Saint. She surely blessed my life here in Cincinnati, and I share her story whenever I can...perhaps even at your race in July everyone can look down at their (racing) shoes and see that by running they are contributing to such a wonderful cause, but most importantly to remember such a beautiful, beautiful girl.

"Isabella is sleeping and I am thinking…thinking…thinking…. I hope that you all are well and that your week is off to a good start. I found out today that we may be heading home as early as Wednesday this week. We go for a full body CAT scan on Wednesday morning and if her counts continue to rise we’ll be discharged. Isabella is still on three antibiotics and her regular anti fungal but she is feeling good. I’m not sure yet how much time we will have at home in between rounds, I’m hoping for another week. Thanks for the continued support for my family. It means so much to all of us.

Tonight I want to share a story with you.

Shoes
While shopping for a new pair of summer sandals for Isabella (she has outgrown her other ones since we’ve been here. Actually, she is growing like a weed), I over hear a woman talking about another child’s shoes. She mentions that she wished her kids could keep their shoes so clean. I politely smiled all the while silently thinking, get down on your knees and thank the Lord your children are able to get their shoes dirty. What I wouldn’t give for Isabella’s shoes to be filthy. Why? Because that would mean she could play like normal kids, she could get dirty and not worry about her counts, not worry about potential life-threatening bacteria … just play. Then I realized I needed to get down on my knees and thank the Lord. I know there are countless parents out there who would give anything to have their children’s shoes be “clean” because that would mean they are still here, instead they have been taken from this earth. Cancer changes everything. Even the way you look at shoes.

When you finish reading this take a moment and go look at your children's shoes and say a prayer of Thanksgiving for them. For "clean & white" shoes, filthy shoes, outgrown shoes, and to grow into shoes. Give thanks for your children's need for shoes.

Good Night All! Hold your loved ones tight!
Monica"

Love,
Sarah Regan
(Maria Holaday's past babysitter in Legend Hills)

God bless you all, and your need for shoes.

Race Registration Is Officially Open!

2008-04-29T16:55:00.004-05:00

We are excited to announce that registration for the 1st Annual Smiles For Sophie Forever Walk/Run is open. You can register online using the link (look for it under the "Upcoming Events" section) on Sophie's new site. If you do register online using active, you will have the opportunity to become a fundraiser for this event; you can do this individually or you can form a team. All you have to do is create a basic page, and email it to your friends and family explaining the event and why you are running, and then ask them to consider "sponsoring" you. We are currently in the process of forming incentives for top fundraisers. We encourage you to consider this as a means to raise additional funds for our cause.

If you prefer not to register online, you can mail in the registration form, that you can download and print directly from Sophie's site. If you would prefer to have a form mailed to you, please contact pkvaneuwen@oh.rr.com.

We are so excited that the event is "now official" and can't wait to see the registrations rolling in! We are asking you to tell anyone and everyone you think would be interested in running or walking to support our cause.

We are also excited to announce our first 2 corporate sponsors. One is Key Bank and the other is Fairview Hospital. We are so grateful for the support of our community.

Thanks a million to all of you who are helping to make this event a success.

New website coming!!!

2008-04-17T21:53:00.012-05:00

Well pretty soon, this will not be the "home page" for Smiles For Sophie anymore.

Once the new website is up and running, I will continue to post to this blog, but you will now need to access the blog by going to the new site at smilesforsophieforever.org OR smilesforsophie.com (we will redirect you to the new site automatically). The blog will now just be used for my updates. You can read the updates by clicking on the "blog" tab on the new website. All the previous links, magnet purchases, pictures, etc will be on the new site as well.

To me this is a big step, and we are excited, but it is also bittersweet in many ways.

We want to thank those of you who came to the planning meeting for the 1st Annual Smiles for Sophie Forever Run/Walk. We are so humbled by the number of you who are willing to help us, because you believe in our cause of searching for and finding a cure and supporting families who will battle this as we search for that cure.

Below I am posting our mission, so those of you who couldn't attend the meeting will know what our foundation is all about.

The mission of Smiles For Sophie Forever –A Foundation Confronting Pediatric Brain Cancer is threefold:

to provide financial and emotional support to families burdened by pediatric brain tumors
to promote a global awareness of not only pediatric brain tumors, but also an awareness of the lack of funding allocated for pediatric brain cancer research; and
to provide financial support to St. Jude, where Sophie was treated, and to other viable organizations committed to the treatment and cure of pediatric brain cancer.

Our paperwork is submitted and now we wait. Hopefully with the connections we have, we will be able to get this pushed through sooner than later. Regardless of how long it takes, we will continue to plan for the race and pursue our mission.

Our next meeting will be held on Wednesday, April 30th at 7:30pm at Swingos Grand Tavern in Avon Lake. Everyone is invited, and we'd love your input and help, even if you were not able to attend the first meeting. We want to thank Swingos for providing us with appetizers and for allowing us to use their meeting space, and for accommodating the greater number of people that we thought were coming without blinking a eye. We cannot say enough good things about Swingos. They are truly committed to the community!

More information on the run/walk will be coming on the new website. We are still working on some last minute details with the registration form and the online registration link, so bear with us while we make the last few changes.

Once you are able to register online, you will see that you have the option of telling your friends and family about the cause for which you are running/walking and asking them to consider sponsoring you and your efforts, in order to raise additional money for our cause. We know this will continue to bring Smiles to Sophie FOREVER. Even though we know that pediatric brain cancer "won't make you smile."

Again, you will soon be able to read all the race details on the website and access the registration form as they become available, but in the meantime, here are a few answers to some questions we have been asked.

The race will start and end at the Walker Road Park in Avon Lake, Ohio.

This event is for families. There will be a shorter walk for those who are planning on pushing or pulling younger ones in strollers or wagons.

We are planning some super fun and exciting activities for children for after the race, as well as birthday cake for everyone!

In addition, we are currently looking into hotels in the area that might be willing to give us a group discount for the event, so that those who are coming from out of town will have a place to stay. (Thanks all you Cincinnatians and Michiganders!) Stay tuned to the new website for that information as well.

Again, I will post Kristin VanEuwen's information, as she is "heading" up this event. Feel free to contact her with questions, or if you would like to help, or if you have any thoughts or ideas to share. Again, thank you to everyone who has helped already. We fully realize that we could not be doing this without all the help from so many generous volunteers.

I hope you know that by helping us you really will make a difference in the life of a family battling pediatric brain cancer; ideally by helping us fund research for a cure, but if that cure has not been found we will find a way to help the families and ease the burden. We know that with all your help and fundraising efforts, we will one day see a cure for some type of brain cancer, which will in turn lead the way to a cure for all types of cancer.

Kristin VanEuwen: pkvaneuwen@oh.rr.com, 440-781-1179

I talked to the mother of Ashley Boross (another pediatric brain cancer warrior) yesterday. This family lives not far from us in Sheffield Lake. I never really thought that there would be any pain that would compare to losing Sophie, but after talking with yet another mother who is watching her child suffer because of a brain tumor, all those horrible feelings of despair came rushing back. It reaffirmed to me the importance of fighting this fight for all those children afflicted with brain cancer. I started this post on Tuesday, and today is Thursday. I took dinner over to Ashley and her family, so I had the privilege of meeting another fighter. What a sweet girl! Even though she was laying in bed, she was abe to speak to me in such a sweet polite voice. I am honored to have met her and her mother. You can read Ashley's story on at caringbridge.org. Her name is Ashley Boross.

Lastly, one more big thanks to Kristin, Mo and Katy for all they have done in coordinating the run/walk and also to Pete for providing the legal counsel and assisting with the non-profit paperwork. We still have lots to do but they have been vital in the progress we have made so far. We know God has placed these people in our lives for a specific reason, and helping us honor Sophie, and do what she would want us to do, is the best reason of all.

And of course, a special thank-you to Omar Trevino of Dios Design...he is the very generous volunteer who offered to take on building Sophie's new site. His sister is Donna Ferchill of the Jennifer Ferchill Foundation, and both of them have been so kind to offer us their help. We are more than grateful!

As you will see when you first visit the new site, there is a lot of information there. Obviously we had a lot of requests and Omar so wonderfully put our thoughts and visions into this great design. We hope you will love it as much as we do...we couldn't have envisioned a better way to honor our Sweet Sophie Girl!

The picture I posted was taken as we neared the end of radiation at St. Jude...one year ago tomorrow.

6 Months Without Sophie

2008-04-06T21:13:00.003-05:00

First things first. For those of you who are looking for simple ways to make a difference, here are some things you can do.

Please take a minute to go to this website and sign the petition to get a pediatric brain cancer stamp created through the U.S. Postal Service. I think this idea is a great way to spread awareness, and really hope you might take a minute to help make this a reality.

http://www.thepetitionsite.com/petition/521710130

Also, please visit Grace's carepage. This update includes instructions on how to get pre-written letters emailed to you so you can send them on to our Congress people.

http://www.carepages.com/UpdateListing?pagenumber=2&seed=123608&ClusterNodeID=jb06&tlcx1=chp&tlcx2=1292605

Both of these things take just a minute, and could make a difference in the life of child with cancer.

Our first Smiles For Sophie Forever 5K Walk/Run meeting is still on schedule for this Wednesday April 9 at 6:30. It will be held at Swingos Grand Tavern in Avon Lake. Email Kristin at pkvaneuwen@oh.rr.com for more information. Everyone is invited, and we would be so grateful for your time and talent.

We are making progress with IRS paperwork, the race and with the website. We are hoping that the information, registration and fundraising details will be posted by the end of the week. Thank you for your patience, and for the many inquiries about the details. We know it is going to be a fun day and a great birthday party for Sophie!

Well, what can I say. It's been another month. Another month without Sophie, another month in which children have died from a DIPG and another month in which more children have been diagnosed with brain cancer.

The pain of missing Sophie still stings my heart as it did the day she died. She will not be back, I will not wake up from this nightmare; those things will not change. However, I can only hope and pray that what happens to other children and families will change. I am steadfast in my desire to do something that might help these children and families and ultimately cure this disease.

Little by little I go through Sophie's things. Today I was looking through her nightstand. I found a couple old videos she used to watch in her room. I found her "Book of Colors" that she had made in preschool, and I found the book "The Night Before Christmas." That brought back so many memories, as we read that every night during the Christmas season of 2005 and 2006. When Sophie was just two and a half, she could recite that book and tell you what was coming next. I can still hear her saying, "mama in her kerchief and I in my cap" and "tore open the shutters and threw up the sash." This past Christmas I wondered what happened to that book as I got out all the other Christmas children's books while we were decorating. So, as I miss Sophie here every day, it's those little things that hurt the most.

I have so many good memories of times with Sophie; even those memories we made after she was diagnosed. I know those months weren't spent doing what we had always envisioned, but I can distinctly remember fun times I had with Sophie and how her laugh sounded and her smile looked as the disease progressed. The picture I included was taken exactly one year ago. We were at St. Jude. Sophie was a month into radiation; hindsight tells us she was doing well, while at the time, we thought she wasn't "getting better" fast enough. She and my Mom were having a party with many of the stuffed animals that had been sent to her. When I saw this picture, I noticed her puffy steroid cheeks, but then I looked past that to the beautiful smile she had.

I always smile when I think of her smile and when I remember a funny thing she said or did, but a lot of times I have a heavy heart when I think of what she went through. The worst time for me is at night; my mind is like a song on repeat as I replay time and time again all the things that Sophie, and our family endured during her battle. The other night as I was trying to fall asleep, I started to think about what was going through Sophie's mind, as she lost all of her physical abilities which would have allowed her to do what she wanted. I was laying on my back, and I thought to myself, this is how Sophie felt. Each morning she would lay in bed next to me and wait until something told me to wake up and look at her. Sometimes it was at midnight, other times at 4:00am, 6:00am or 8:00am. I thought about all the times she woke up waiting for me to wake up, maybe because she was thirsty, or needed her position adjusted or needed a cuddle; I pray to God there were not many times that I didn't sense her being awake, because she had no way of getting my attention. I like to believe that I always "knew" when she was awake, maybe it was a faint moan or something, because I swear that every time I opened my eyes, she would reach out that left hand to me. But if there were times she woke up and I didn't, I wondered if she just felt sad and laid there until she fell back asleep.

For a second I laid in bed and imagined what it would be like to lay there, not being able to talk, or sit up, or move your right arm or leg. The feeling sent a chill through my spine as I really grasped and realized how scared Sophie must have felt at times. That scared, helpless feeling she had, day after day, is all because of a tumor called a diffuse intrinsic pontine glioma, for which there is no known cure. If you stop what you are doing for a minute and put yourself in Sophie's shoes, imagine what you would feel like if you lost the physical ability to do everything you take for granted. You would not be sitting at your computer, typing, reading, taking a sip of water, going to the bathroom, scratching an itch, or having a way of notifying somebody if you were about to throw up (and if you were like Sophie, this was a daily occurrence.) I know she will never again have to experience those feelings, and as much as my heart aches for what Sophie went through, it aches too for those children who will actually experience what Sophie did.

Having gone through this battle with Sophie, and knowing and following the battles of other children with DIPG, it's obvious to me that there are different types of DIPGs. I say this simply because of the way and speed that the tumor progresses and how the symptoms of disease progression differ from one child to the next. DIPGs are usually grouped into one category because their pathology cannot be determined without a biopsy, which cannot be done until death, due to the risks, and even after death, many parents chose not to do a biopsy anyway.

I think about Sophie's last day here on Earth. Obviously her physical condition had deteriorated, and we could have known that her days were numbered. But because she seemed to be having a few better days, we thought she would be with us a while longer.

In fact, the afternoon that she died, we went to a picnic that was hosted by some of Marc's co-workers and their families. There, Sophie rode reclined in her stroller, and although she was a little apprehensive about where we were going, she enjoyed some bites of a hot dog, hamburger, chips, and even some ginger ale. I was surprised and impressed with how she was able to chew and swallow some food, as she had been having increased difficulty doing so.

I replay that day over and over in my mind because I had a hair appointment that day. I left the picnic and Marc stayed with Sophie and Sarah, and his Aunt Margaux who had gone to help. Over and over I tell myself I wish I had stayed and spent the rest of the afternoon with her. You know what they say about hindsight. When I returned home from my appointment, Marc was cleaning up a little because Sophie had thrown up. He had bathed her, and wiped up the mess on the chair and floor, while Aunt Margaux occupied Sarah. Margaux had Sarah up on the bed with Sophie and they were being silly. Sophie was trying to hold Sarah's hand, and it's a picture I will have forever in my mind.

I curled up with Sophie for a minute, and Marc left with Sarah to go to the store to get a new computer for me because my other one had crashed. Marc also often says he never would have left if he knew what was going to unfold later that night.
As I cuddled with Sophie, she fell asleep around 6:30. I got up and got a few chores done, and would periodically go in to check on Sophie. A few times, she had her eyes open and would reach for me like she always did, and I would lay down with her until she fell back to sleep. I thought this would be another "normal" night.

Marc came back with the computer, bathed Sarah and put her to bed, and began unpacking things. Around 8:30, my friend Andrea arrived because she was planning on staying with us the next day to spend time with Sophie and help out. We talked for a while in the kitchen, and then it was time for Sophie's PER treatment. Marc said he was going to bed (it was his turn to sleep in Sophie's room, while I slept downstairs with her.) I turned on the machine and went through the treatment. Sophie didn't open her eyes, but I was not surprised because there were times before that she would not wake up for the treatment if she had been sleeping.

Andrea and I sat on the bed after the treatments and watched Sophie. Her eye began to water, and she made a few rustling sounds in her throat. I tried to wake her, but she didn't really respond. She briefly opened her eyes, and then I remember saying to Andrea, "Does she look blue to you?" She said to turn on the lights (because we only had the night light on). I ran upstairs and got Marc who flew down the stairs.

When we got back to the bedroom, it was clear that Sophie was blue, around her nose, and on her nailbeds. It took us a minute to get the oxygen machine going because we had had it for a couple months and had not had to use it. Once we figured that out, Sophie regained her color, but didn't open her eyes.

We tried to wake her, and although she never opened her eyes, she did squeeze my hand when I told her to squeeze it if she could hear me.

We called my parents in Michigan and told them how Sophie's condition had changed. They said they were getting in the car right away to head to Cleveland.

I called Megan and asked her to come look at Sophie and tell me what she thought. (We really hadn't had any "scary" times with Sophie up to this point, and were really just looking for reassurance that this was "normal.") Megan said she would come right away, and in the meantime we called hospice to come and look at her. Unfortunately, the on-call hospice nurse was at least an hour away, so we were on pins and needles waiting for a "medical" evaluation. When Megan got there, her initial thought was that Sophie "looked good." She said she thought her breathing was a little shallow, but nothing like how it gets at "the end." I was a little relieved and we just sat with Sophie still trying to rouse her.

At this time it was about 10:00pm. We rubbed Sophie's legs and hands and told her how beautiful and special she was, not knowing if this was our last chance to talk to her. We told her that it was okay to go and see Jesus, and that if she saw Him to not be afraid and that we would always be with her. We were afraid to move her because we didn't know if a change in position would cause the tumor to press on a place that would make breathing difficult. We had the oxygen going, but at one point she started to turn blue again, and then she stopped breathing. We just sort of sat there in disbelief, and then I began to panic and have the "oh no, this is NOT happening right now thoughts." Megan suggested to Marc that maybe he would want to start mouth to mouth. He did that a couple times and then she seemed okay. It amazed me how fast I settled down and went into "take care of Sophie mode" when all I really wanted to do was scream at the top of my lungs.

We talked to Sophie some more, and she began to make a few gurgling noises. We decided to use the suction and for the first time ever, the "stuff" coming up had a brown tint to it. I was frightened, although Megan said it can be like that if there is fluid in the lungs (which Sophie had not had up to that point.)

I remember really having to go to the bathroom but I was scared to leave her. I really thought I would have an accident if I didn't go, so I went, while Andrea kept yelling at me to hurry.

Right before the hospice nurse arrived a little after 11:00.pm, Sophie seemed a little better. At 11:17pm I mentioned to Marc that it was good, because we made it past 11:11. (With all the times we had been seeing 11:11, we had it in the back of our minds that would be the day or time something would happen.) She wasn't making the noises and her color was better. When the hospice nurse took Sophie's vitals, she said Sophie's pulse was not real strong and that her breathing was shallow. Soon after, Sophie starting taking these heaving breaths. I looked at the nurse with wide, scared eyes, and she said, "this is what happens at the end."

Megan encouraged me to place Sophie in my arms, even though I was afraid of hurting her or her breathing. Megan and Andrea and the hospice nurse left Marc and me alone with Sophie. Sophie continued to take a deep heaving breath (a sound I will always remember) every few seconds. Through our tears and shaky voices, we continued to hold her and tell her we love her. Marc sang his rendition of "hush little Sophie" that he had sung to her many times in her four years. I had a very hard time containing myself then, and I just prayed and prayed that she wasn't in any pain. Breath after agonizing breath, we tried to comfort her and said, "it's okay, Sophie. Mommy and Daddy are here. You'll be okay," I flash backed to all the days of doctors and nurses appointments when I told her the same things. I always felt that I was providing her with some comfort, but this time was different. I knew in my heart that the only way her suffering would be relieved, and that she would feel true comfort, was to go and be with Jesus. I told her over and over, that I would see her again, and to not be afraid. I asked her to watch over me and I think I even told her that in heaven she wouldn't have her "stupid" tumor.

As the minutes passed, the seconds between each breath became longer, and the breaths became softer. I remember thinking, "How long does this part last?" because I always thought it was a couple breaths and then no more. I was worried that Sophie was scared to "cross over" and I longed to be able to make the transition with her. We have never felt so helpless, and this day made the day of diagnosis a walk in the park. Sophie took a breath and then waited a good 10 seconds to take her last quiet Earthly breath. I was cradling Sophie like I had when she was first born when the hospice nurse came back in. She looked at Sophie and asked us if she could listen for a pulse. She did, and there was none. She declared the time of death 11:55pm October 6, 2007. (Megan later told me, that during the half hour when Sophie was struggling to breathe, she prayed to Maria, to "Come and help your friend Sophie." When we put the events in order, we realized that Megan's prayer took place minutes before Sophie left this Earth.)

At that moment, time stood still, the shock set in and I was literally in a daze. Much of what happened after that I barely remember.

I do remember trying to figure out what paperwork we needed for the biopsy. But I never left the room with Sophie. Marc held her for a while, and then people started coming. It was weird. Like when you have a baby, everyone comes to see you in bed, but this time, my baby was dead. It was odd. Marc and I desperately wanted to allow family to see Sophie one last time, but at the same time, the moment was so intimate, and one we knew we would never get back.

Fr. Tim came to the house, and he prayed with us. He shared some comforting thoughts and offered to help in any way he could. (We took him up on that, because we couldn't get the fax to go through, so he offered to go back to the church and wait for it, and then bring it back.)

Somebody asked if we wanted to wake Sarah so she could see Sophie one last time. We said, "No," knowing that we would never get her back to sleep. In that instant, we heard Sarah cry out loudly on the monitor and then go back to sleep.

Family came in crying and touching Sophie. Somebody eventually suggested that maybe Marc and I would want more time alone with her and that was nice. Sophie began to lose the color in her face, and the skin on her legs and feet became splotchy where the blood had pooled. And even though she was dead, I remember thinking how gorgeous she looked. She wasn't blue, more white, almost glowing.

We had to decide on what funeral home to call. And then they arrived in no time. And we waited, and waited for the paperwork to come through for the biopsy. Many times, when the process was taking so long, I thought about saying "forget it" but we didn't. Side note- When we first agreed to the biopsy, I understood that a small sample wold be taken using a needle inserted at the back of her head. When I saw Sophie the first time at the funeral home, I was able to see a thick rope like stitching from ear to ear. (You really had to look close for this; not everyone could see it.) I wondered why that was there, and later learned that they had taken the entire tumor. It's pretty morbid to think of your four year old daughter's skull being opened, but when I think about it today, six months after her death, a part of me is relieved that we did get that tumor out of her head!

After a few hours..it was around 3:00am. We felt that it was time to let her go. How I made that decision, I will never know, because the minute she was gone, I wanted her back. Marc carried her outside with everyone watching. I am thankful that it was the middle of the night, because it would have been quite an ordeal. I was shocked and saddened to see a hearse in my driveway. The funeral director got the stretcher out and said to lay her down when we were ready. Marc did and we tucked her all in up to her chin. It was a little chilly, and I felt strange not putting a coat on her.

The hospice nurse called Marc and me over for one last signature to authorize the biopsy, and said, "I am sorry for your loss." and then that was it.

We stood next to the stretcher and talked to her for the last time. I remember feeling like she wasn't really there in her body, yet that she was watching over us from one of the many stars in the sky that night.

Everyone was still watching us. Unless you have lost a child, you won't understand this, but Marc and I couldn't say anything to anyone. We just wanted to be alone. We didn't even know what to say to each other. I felt as though I wasn't really there, like I was watching this happen to somebody else.

My parents offered to follow the hearse down to the hospital in Akron, with my specific directions to make sure they took good care of Sophie. It was strange not going with her to the hospital, because I had taken her to every visit. I wanted to go too, but I just didn't have it in me. I don't think I watched them pull away. We went inside, and then we asked everybody to leave, except my friend Andrea because we were worried about her driving back to MI all alone at 4:00 in the morning.

When we got back inside, I immediately started cleaning. We wanted everything that had to do with this illness gone, we took all the hospice equipment and medicine out to the garage. The kitchen was messy from all the people in and out. I just felt empty and didn't know what to do. I remember picking up water bottles and wiping down the counter. I wasn't tired, I was going on adrenaline. After I did all I could find to do, I laid down in bed and cried. I cried like I never cried before. I remember thinking, "I cannot believe this just happened." I knew in my mind that Sophie had been dying since the day she was diagnosed, but something prevented me from really grasping that, as we went through all the motions of caring for her day to day.

I realize there are just some things in life we will never understand, and this whole ordeal is one of them. What I have come to understand, is that there is a lot that we all can learn from this, and a lot we can do to help those afflicted and to search for a cure.

When I went with Sarah to the cemetery yesterday, the sun was shining and there were ducks and geese in the pond. The snow had melted and I really felt a sense of comfort being there. Maybe because it was a little warmer, and I didn't worry about how freezing cold it must be six feet under. Sophie is with me every day and gives me guidance when I need it most. Not many people are as lucky as I am to have the honor of being the mother of a saint. I love you and miss you Sophie Girl!

To Ponder

2008-04-02T21:39:00.002-05:00

I just got around to reading this devotional and thought I would put it out there in case it hits home to you like it did to me. It's often easy to feel sorry for all that has happened, and wonder why it was our daughter and family that was burdened when it seems like there are so many "healthy and normal" families out there. I can always use a reminder that God is in control, and created me for a purpose. Some days I feel like I am fulfilling that purpose better than others, so reminders are good.

2008/04/02

The Captivity Of Discontent
by Jon Walker

“I don’t say this out of need, for I have learned to be content in whatever circumstances I am. I know both how to have a little, and I know how to have a lot. In any and all circumstances I have learned the secret [of being content]—whether well-fed or hungry, whether in abundance or in need.” Philippians 4:11–12 (HCSB)

*** *** ***

The Apostle Paul, who was blessed with great privileges – but also beaten and stripped of everything he had – taught that true contentment must be learned: “I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.” (Philippians 4:12, NIV)

He teaches that God gives us strength to be content. This is an important spiritual truth to learn because if wealth, good looks, or the seemingly perfect spouse brought lasting contentment, then Hollywood would be filled with some of the most content and happy people on earth. But it’s not.

What does this mean?

Don’t compare yourself to others – When you compare your life with someone else’s, the only place it can lead is discontent. There will always be people who appear to be better off than you, but you don’t know their real circumstances.

I recall counseling a husband many years ago, who said he wished his wife could be more like so-and-so, and he named a woman in our congregation. What he didn’t know was that the woman was an alcoholic who was causing awful heartache and stress for her family and her husband. That’s why the Bible says it is unwise to compare ourselves with others or even with ourselves! (2 Corinthians 10:12)

Be grateful for who you are and what you have – Learning to be content requires that you stop any “when and then” thinking – “When I am ___________, then I’ll be happy.” (You fill in the blank.) You may actually be content for a little while but then someone else or something else will come along and drain the contentment from your life.

But listen – you are unique. God created you to be like nobody else, so why would you want to be anyone else? God is perfect, and you were his perfect choice to be you! Understanding that is a huge step toward being content with your life.

And then look at all the things God has given you. So often we allow what we don’t have to dominate our focus to the point we forget the many, wonderful things we already have – not only material things, but far more important blessings, such as family and friends.

Give yourself to others – If you will begin giving yourself to others, sharing what things you do have, sharing your time and your talents, you will find yourself learning to be content. Helping others will give you an appreciation for what you have and who you are but, more importantly, you will find yourself growing in contentment. Why? Because God designed us to serve and share with others and until we do that, we will feel great discontent.

Focus on things with eternal value – The real secret to becoming content is to focus on the things that have eternal value. It may be a familiar teaching to you, but Jesus said we should store up our treasures in heaven, and not on earth “where moth and rust destroy, and where thieves break in and steal.” (Matthew 6:19–21, NIV)

Think about the things in your life – What will last forever? What will last at least for your lifetime? What will last only a few short years, or months, or days? Based on eternal value, what things are most important in your life? Where – and with whom – should you invest your most time and energy?

By reorganizing your life around eternal priorities, you will find yourself growing in contentment, as you live according to God’s design and purpose.
© 2008 Purpose Driven Life. All rights reserved.
Pastor Jon Walker is a writer for www.GraceCreates.com.

The next story is one I heard at Sam's funeral, and have been meaning to share. I've seen it two times since the funeral and I am taking that as my sign that I really should share it.

The Dragonfly Story
Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, …scurrying over the soft mud on the bottom of the pond.
They did notice that every once in a while one of their colony seemed to lose interest in going about with its friends. Clinging to the stem of a pond lily, it gradually moved out of sight and was seen no more.
"Look!" said one of the water bugs to another, "One of our colony is climbing up the lily stalk. Where do you think he's going?" Up, up, up it slowly went...Even as they watched, the water bug disappeared from sight. His friends waited and waited but he didn't return.
"That's funny!" said one water bug to another…
"Wasn't he happy here?" asked a second…
"Where do you suppose he went?" wondered a third…No one had an answer. They were greatly puzzled.
Finally one of the water bugs gathered his friends together. "I have an idea. The next one of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why."
"We promise," they said solemnly.
One Spring day not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up he went. Before he knew what was happening, he had broken through the surface of the water and fallen into the broad and free lily pad above.
When he awoke, he looked about with surprise. He couldn't believe what he saw. A startling change had come over his old body. His movement revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings...The warmth of the sun soon dried the moisture from his new body. He moved his wings again and suddenly found himself flying about in great curves. As he flew through the air he felt exhilarated in the new atmosphere.
By and by the new dragonfly landed happily on a lily pad to rest. Then it was, that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! Above the water, he had become a dragonfly, swooping and dipping. There they were scurrying around just as he had been doing some time before.
Then the dragonfly remembered the promise. Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water…
"I can't return!" he said in dismay. "At least I tried. But I can't keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I'll just have to wait until they become dragonflies too. Then they'll understand what has happened to me, and where I went."
And the dragonfly winged off happily into his wonderful new world of sun and air...

God Bless You All.

I'll post again on the dreaded 6th.

Save the Date!!!!!!

2008-03-20T11:00:00.000-05:00

Announcing the First Annual Smiles For Sophie Forever 5K Run/Walk!!!!!!!!

We are so excited to share with you this preliminary information about the first event we will be having as a part of our new non-profit organization that is currently in the works. We are hoping that the State and IRS paperwork will be approved sometime very soon!

The run/walk will be held on the morning of July 4, 2008 here in Avon Lake, Ohio. This idea has been in the back of our minds for some time now, and we weren't sure how to go about it. But after some tremendous support and encouragement from some very special people, we decided to make it a go. Many of you know that Sophie was born on the 4th of July and we thought this was a perfect way to celebrate her first birthday in heaven, as well as launch our latest endeavor...Smiles For Sophie Forever --- A Foundation Confronting Pediatric Brain Cancer.

The picture I posted was taken in May of 2006 when Marc ran the Cleveland Marathon. Marc stopped when we met him along the route to have his picture taken with Sophie in the rain. Sophie was excited to wear the "Run Daddy Run" shirt and I know on July 4th, she will be watching us and saying, "Run, Supporters Run!"

In addition to the Run/Walk on July 4th, there will be other ways for adults and children to have fun; in case you aren't a runner or walker. We want this event to be for the entire family so we will have something for everyone and of course we will have either a giant birthday cake, or tons of cupcakes!

We do realize that this is a holiday weekend and a time for family, celebrations and traditions. But it is our hope that you will realize the importance of our mission of raising awareness and funds to cure pediatric brain cancer, and to help those afflicted. Perhaps this event could become one of your new "traditions" as we plan to hold the race each year on July 4th.

We are currently seeking volunteers to help with our cause. We need help with planning the details of the event, as well as volunteers to work on race day.

If you are interested, in helping, please contact Kristin Van Euwen at pkvaneuwen@oh.rr.com or 440 781-1179.

We will be having our first planning meeting on Wednesday April 9, 2008 at Swingos Grand Tavern on Walker Road in Avon Lake. We will start the meeting at 6:30pm. If you are planning on coming, please RSVP Kristin, so we know how many to expect. If you cannot be there at 6:30, please feel free to come any time after. We'd be honored if you would share this information with anyone who might be interested in helping with our cause.

We thank you all ahead of time for your commitment and dedication. Of course we would like to give a huge thank you to Kristin Van Euwen and Mo Loesch for all the work they have done already!

Also, while I am thanking people, we want to express our gratitude to those of you who have bought the "Sophie" magnets. In addition to our family and friends, many "strangers" have bought them too, and that is awesome! Just the other day I was driving and saw a magnet on the back of a car that I did not recognize, and that made my day. I love to know that awareness is being spread by people who we've never met! Thank you! Thank you! There are still magnets available, so if you would like one, we encourage you to place your order.

Each holiday without Sophie is difficult. On St. Patrick's Day, I remembered that last year we were at St. Jude and Sophie participated in a few activities in the patient lobby. I vividly remember her wanting to stop at the "nail painting station" where she picked the brightest green they had. She was so excited, even though she was tired after having just woken up from sedation/radiation. This St. Patrick's Day, Marc and I went to pick out the memorial monument for Sophie's grave. Boy how things have changed.

We have been receiving Easter cards from so many very thoughtful people. And we are thankful for the support and prayers you send our way.

Last Easter we attended the Easter Vigil for Marc's confirmation. I remember Sophie was so excited to put her Easter dress on and have her hair curled. She was so good in church even though it was a long service. We miss her so much.

Happy Easter to all of you. May you realize the miracle of this day, and how truly blessed we all are.

Don't forget to save the dates: July 4th, 2008 and April 9, 2008.

Website Help

2008-03-15T17:30:00.000-05:00

Well, we are still in the process of making the changes to Sophie's site and have all our ideas in place, but we've realized we need the help of a willing professional. This current site is really just a template and we can't quite make the changes to it that we'd like, to really honor Sophie's memory and focus on doing our part to help find a cure.

We know many of you check in on this site regularly, so we thought we'd start here. If you or anybody you know would be willing to donate or discount your/their web design services, please contact Sarah at smiklaski@cox.net. Although we've been trying to teach ourselves and pick through the computer language, we think it would be months before we'd ever get anywhere. And we don't really want to delay any longer as I've been saying I wanted to change this site since November. Plus, we're slowly working on more and more fundraising events and ideas and want a good place to get the word out. We so greatly appreciate any generosity in helping our cause.

Thank you!

More Thoughts After 5 Months Without Sophie

2008-03-07T10:48:00.005-05:00

I thought of something that I wanted to include on my post yesterday. We finally talked to the doctor at St. Jude who is the head of the pathology/biopsy study that we donated Sophie's tumor to after she died. (A wonderful foundation called Tyler's Treehouse funded this study; see http://www.tylerstreehouse.org/about.asp for more information about another DIPG warrior.

Marc talked to Dr. Broniser and he confirmed it was indeed a high grade glioma, very aggressive and the fast growing kind; and in good condition too (whatever that means).

We have heard mixed sentiments about our decision to donate Sophie's tumor. Believe me, it was not an easy one. First because we did not have the paperwork ready and we were under a time crunch, and also because on the night she died, the last thing I wanted to do was ship her body off to a hospital without me. Something kept telling me that donating the tumor was what we should do, and in my heart I knew that Sophie would really want to help someone else if she could. My parents accompanied the hearse down to Akron where the biopsy was performed and said that the doctor there (who came it at 4:00am to do the surgery free of charge) was wonderful.

On another note, I had asked the question to Sophie's doctor at St. Jude while we were there for radiation if Sophie's organs would be eligible for donation in the event of her death. At the time, it was hard for me to think of her dying, but still I wanted to know. I was disappointed to hear that because her body had been exposed to chemo and radiation her body could not be used for anything. On the night she died, I remembered the conversation we had had, and knew that since we couldn't help another child by donating Sophie's organs, we should probably donate the tumor in an effort to help someone else.

I would like to call Dr. Broniser again at St. Jude to ask him more specific questions...if I can get the courage up. You know the information that it provides us won't help us now, but there are still things that I still would like to learn about that stupid tumor.

After Sophie's diagnosis, we thought that maybe Sophie's tumor was slow growing because the symptoms had a longer period of onset. It all makes sense now though, because she only survived 7 months; which would be indicative of a fast growing tumor. It makes me think that the answer to our question, "Has she had it since birth?" is "No."

I also wanted to post this story from Tamara Ekis (Grace's Mom). I was so touched when she told me this at the Soiree and I wanted to post these rainbow pictures as well. Below are Tamara's words...

On February 6, we were having odd weather in Pittsburgh. It was raining, snowing, and the sun was shining all at once. As I looked out of our back windows, I saw a beautiful, full rainbow over the new houses behind us. I ran to the couch to get Grace so that I could take her out on the deck to see it. Brian said to get the camera and he would get Grace. So, Brian picked her up and we all went out. When we got out on the deck, there was not one rainbow, but two. Two beautiful, perfect rainbows. The colors were so vibrant, it was incredible.

Unfortunately, I had not realized that the SD card was still in the computer, and not the camera. By the time I realized and got the card out of the computer, the second rainbow had faded and one stood alone. We took pictures of it, feeling a bit sad to have missed the two.

The kids were so excited to see the rainbows and, even though I marveled at their beauty, I instantly knew that Grace would only be with us a short while longer. I knew in my heart that the two rainbows were Maria and Sophie, coming to get Grace and take her to heaven with them. You see, I had been very worried about Grace going to heaven without me being there to hold her hand, and distraught about the fact that she wouldn't know anyone. As the warm tears streamed down my face, I told Brian that I knew it was them. They would be coming back very soon.

Additionally, a neighbor had called to tell us that there looked to be a rainbow coming right out from Grace's bedroom window and Susan (our good friend you met at the Soiree) told us that even though she was on her deck a mere two houses away, she did not see the second rainbow.

We saw a second rainbow....we saw the signs of Sophie and Maria.....

5 Months Without Sophie

2008-03-06T14:06:00.005-05:00

For those of you who didn't get to attend, I thought the Sunflower Soiree for the PFMF was pretty awesome...and I can't wait for next year's! In addition to raising money which is so important for funding research and finding a cure, I think the event raised something which is equally important. And that is awareness. My hope is that everyone who attended the fundraiser and everyone who knows of Sophie and Maria and their stories, will tell at least one person what a gray ribbon means, and how underfunded pediatric brain cancer research is. Thank you to those of you that came to support us as well as this very important cause.

While we were at the soiree, we had the honor of meeting yet another family traveling the same road we are. Tamara and Brian Ekis lost their beautiful little Grace to DIPG this past Valentine's Day. I asked Tamara for permission to copy her explanation of how this illness makes a parent feel. I related so well to her description; she said this about Grace's journey to heaven. "For almost 14 months we felt as though we wanted to wake up from a nightmare. Now it is like her life was but a beautiful dream that we cannot get back to..." I am amazed at how she described to a tee what I feel every day. The only difference for us is that our nightmare lasted 7 and 1/2 months...I don't know if that is good or bad.

Even though I've had over a year to process Sophie's diagnosis and prognosis, it still shocks me when I think about it. The fact that the doctors at St. Jude, this great facility known for breakthrough discoveries in cancer research, told us there was nothing they could do for us is shocking. As a parent, we come to expect that taking our child to a medical professional will make her better or cure her. Unfortunately for us, there was no cure, and nothing the doctors could do. I will never forget the feelings of despair when we were given the prognosis and the overwhelming feelings of anxiety and responsibility as we realized that we had to try and find our own cure, all while taking care of Sophie. These feelings of helplessness are something that I really hope another family will not have to feel. My hope is that by raising awareness and money, someday we will be able to say that we have accomplished this goal.

Two weeks ago, we had a big snowfall, so I bundled Sarah up and took her out for a walk around the block in the sled. As we got to the other side of the block my mind began to wander and I started thinking about Sophie and how throughout her last months we would put her in the stroller and take her around the block. She never really wanted to go, but we always thought that the sunshine was good for her. I remember how she would reach her hand back to hold mine as I pushed her. She really didn't want anyone else to push her, and this was her way of making sure she got her way. During September, she could no longer support her body, or turn her head around. Somedays I feel bad that I took her for these walks because she really was way more content snuggled up in bed or on the couch. As I pulled Sarah in the sled, I was having one of those moments of guilt, so I started telling Sophie again, that I loved her, and that I was sorry. As we approached the corner, I saw a truck turning toward us. As I looked at the truck, I could see that there was a rainbow on the side of the truck and it said something like "...Rainbow Rentals" and this truck was pulling a trailer of 2 porta potties. I smiled because I knew Sophie was with me in that moment just as I was thinking of her. I had seen this truck once before...on the way to the cemetery for Marc's Grandpa's funeral. Then I was thinking of Sophie as we passed Rainbow Babies and Children's Hospital - where I hadn't been since my last clinic appointment with Sophie in September. I know she is with me every day giving me more reminders somedays than others.

We went to Michigan last week end for the funeral of Sam Jones. He was another courageous warrior fighting the DIPG monster. We met Sam and his parents at St. Jude when we were there for radiation. At the time, Sam was there for a follow up MRI and was doing so well. Another reason why I hate this tumor...he was doing so well, and then the tumor came back with a vengeance, and now he is gone.

Marc's parents watched Sarah for us while we went to the funeral, and on Saturday morning Marc's Mom who is a realtor went to show a house. When she looked up the address, it was 1111. And while she was showing the house, she went into one of the bedrooms, and on the wall, in large letters, it said, "remember the name...Sophie Elizabeth" The little girl who lives in the house must share the name of our little Sophie...I don't believe that was a coincidence as Sophie was heavy on our minds as we attended the funeral. Please pray for Sam and his family as the initial shock wears off and the extreme feelings of loss set in.

Today Sarah and I visited the cemetery. The snow was very deep, and covering the Easter flag and decorations I had placed at her grave. The ground was frozen, so I couldn't "fix" anything...I wrote in the snow "I love you Sophie" and do I ever. We miss you Sophie girl. Sometimes 5 months feels like 5 minutes and other times it feels like 5 years...

Thank you to those of you who continue to show us your support, and for those of you who have already purchased the magnets. My sister is going to be busy shipping them, but that is a good thing. I can't really put into words just how meaningful your support is. God bless you.

The magnets are in!!

2008-03-05T18:22:00.003-05:00

Just wanted to post a quick update to let you all know that the magnets are in and they look great!!

So, the paypal buttons are up, but we're still working out a few bugs to make it less confusing. Hopefully we'll get those fixed soon, but until then, on the right hand side of the page you will see two "add to cart" buttons. The first button is to purchase one magnet for $8 and the second button is to purchase two magnets for $15 (if you only want the two for $15, then you must use the second button). Depending on how many you want to purchase, you can use just one button or both (you can change the quantities once you click the button). I know this is a little confusing, but hopefully we'll get it fixed soon! You don't need a paypal account to purchase as the checkout page will give you the option to use a credit card.

If you'd rather pay by check, please contact me at smiklaski@cox.net.

Thanks again for your patience and your support!!

Love,
Sarah

Sophie's Rainbow Magnet

2008-02-28T22:29:00.002-05:00

I am slowly but surely putting some of the ideas I had into something real. As I said before though, things just seem to take much longer than I anticipated.

Anyway, the above picture is of a car magnet that is currently in production and should be available for purchase through Sophie's site in a few weeks. This is just the first step in raising funds for a new project that I am starting to help other families dealing with what our family did last year. The funds that we raise will be divided into three parts to be used to support and help families in three different ways.

I am planning to give one third of all funds raised per year to St. Jude. You know how strongly we feel about supporting St. Jude because of the wonderful care they gave to Sophie, and for all the help they give to families who are faced with catastrophic diseases.

Another third of all funds raised per year will be given to the Prayers From Maria Foundation. This is another foundation that is very near and dear to our hearts because of the relationship we have with Ed and Megan and because of the personal help we received from them and their foundation. You also know that this foundation helps families through their website, and also provides money for grants so that further research can be done, through "traditional medicine" as well as alternative therapies.

The final third of the yearly funds raised will be dedicated to funding a meal program to provide a small amount of help for families afflicted with gliomas. The idea is that the family can apply for a dinner here or there as needed and we will ship it to them on dry ice. I know I was greatly blessed by Kim Walters and all the women who so generously volunteered their time and talent to provide meals 3 days a week to my family for many months while we were spending all our time caring for Sophie when she was battling her tumor. Those meals were a Godsend as it was one less thing I had to worry about each evening (as most were large enough for 2 nights!!) Because I know how much of a help it was, and also because I think this is a great way to honor Sophie's love of cooking, (she always wanted to "help me in the kitchen," even as a toddler), I want to be able to do the same for families all over the US. I am looking for a company to be the supplier of the meals that we can purchase...hopefully at a discount. My hopes are that regardless of where the family is, the meal can get to them. I am planning to start small and then grow as able.

So, as a way to not only get these projects up and running, but also as a tribute to my beautiful daughter Sophie and as a way to raise awareness, I came up with the idea for this magnet. J.J. Lipski's parents, who created the gray ribbon for pediatric brain tumor awareness and are selling them through their website icouldbeyourchild.org, were so kind as to allow me to incorporate the ribbon into my magnet design. As J.J.'s mom said, "awareness is not copyrighted." All proceeds from the sale of this magnet will go directly to this Smiles For Sophie fund.

As of right now, we do not have non-profit status, but are hoping to work towards that very soon. We are going to establish an account with the remaining money that was donated to us during Sophie's illness and will add to that as we find other ways to raise funds. In addition to the magnets, we will soon have rainbow headbands and the "Sophie & Maria's Rainbow Connection" puzzle available for purchase.

Stay tuned as we again get the website and paypal kinks worked out. We are hoping to be able to sell here on Sophie's website using paypal. If not, we might have to do it the old-fashioned way with mailed checks. Nonetheless, the magnets are in production and will soon be available!!

Thanks for the continued prayers and support!! Together we can all make a difference!

Held

2008-02-21T20:20:00.003-05:00

Just a short post to reflect on today as the one year anniversary of Sophie's diagnosis and the day our lives were forever changed. Included at the end of this post is a song entitled, "Held". (You just have to click on the arrow to hear it.) Megan told me about this song a few months ago, and I've wanted to include it in a post since. The lyrics are an accurate description of how I feel everyday. I know I am blessed to be here and to have survived this ordeal. God has gotten me through the past year and reminds me everyday of my ultimate goal of being reunited again with Sophie.

"For I know the plans I have for you," says the Lord. "They are plans for good and not for disaster, to give you a future and a hope." The Lord says, "I will guide you along the best pathway for your life. I will advise you and watch over you." "I command you - be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go." "When they call on me, I will answer; I will be with them in trouble. I will rescue them and honor them." "Don't be afraid, for I am with you. Do not be dismayed, for I am your God. I will strengthen you. I will help you. I will uphold you with my victorious right hand."

JER 29:11 PS 32:8 JOS 1:9 PS 91:15 ISA 41:10

I miss Sophie more than anyone could begin to understand, and would give anything to hold and hug her again. Somedays I still get angry that this happened to Sophie, but then I force myself to think about how much fun she is having in heaven. I thank God for getting me through each day. I thank God for bringing so many of you into my life. Often times, I am amazed that I did survive, but I know that it was nothing that I did, it was all the work of God. Even though Sophie died just 4 months ago in October, I really feel like the "sacred was torn from our lives" one year ago today. Today and everyday I am "HELD," and for that I thank God and all of you.

One year ago today, our life was normal, we were happy, we spent our days with Sophie and she was the highlight of every day. Today, she is only here in spirit and her beautiful body is buried beneath the frozen ground a few miles from our house. Gosh how we miss her. To those of you who are lucky enough to spend each day with a miracle(s) hug them extra tight today and realize how blessed and lucky you are. Live each day as though one year from today you may not be with them.

Sophie, we love you, we miss you, you are forever in our hearts.

NATALIE GRANT lyrics

Happy Valentine's Day Sophie

2008-02-14T13:37:00.003-05:00

Happy Valentine's Day Sophie! We miss you so so much. I know you are sending us the beautiful sunshine that we have today.

Sarah wore the Valentine's shirt that you wore when you were her age. She looked so cute. She got it all dirty, so we had to change her into the Valentine dress that Grandma got her. I was sad though, because Grandma said she had another in 5T just for you, because she bought them last year on clearance. I miss not being able to put you two in matching clothes!

These pictures were from Valentine's Day last year. Remember all the snow we had? We had so much fun sledding. You had a hard time smiling for the camera. Now I know why you tired out so easily, and why you had such a hard time climbing up that little hill.

I miss you Sophie girl. You are my tootle bug and you are in my heart always, but today I'm holding you oh so close!
XOXOXOX

One Year Ago Today

2008-02-11T23:08:00.001-05:00

I was looking through some pictures as I often do, and found this one from exactly one year ago. Despite knowing what was going on in Sophie's head, I remember this day as a happy one, so I thought I'd share.

I'm sad when I think about the fun Sophie and Sarah would be having.

Four Months Without Sophie

2008-02-07T17:19:00.000-05:00

I'm late with my update again. I don't have an excuse, unless Ash Wednesday can be an excuse. Ironic to me that an anniversary of Sophie's death would fall on this significant beginning of time of prayer and repentance. This month not only marks the anniversary of Sophie's death, but also the anniversary of her diagnosis and many "lasts". I cannot believe a year has gone by already. At times I feel like I lost the year 2007. Actually I wish I could lose that year, or just skip over it!

When I think about last February, I now can clearly remember so many things that were "different" about Sophie. Last year, while doing the Valentine's cards for her preschool class, she wanted to stop signing her name after only a few. Looking back, that was surely a sign, because now I can remember how eagerly she decorated and neatly signed her name in cards for people in February of 2006...and she was only two and a half!

Sometimes I wonder why she was given the gift of such intelligence. Why was she chosen to be the child who had an amazing memory, and knew all her letters by 18 months? At the time, I didn't know that it was a big deal, until Sarah turned 18 months in January, and couldn't identify her letters, yet we consider her to be very bright. I think Sophie was an old soul, filled with wisdom beyond her years. When I reflect back on her intelligence, kindness and vocabulary, it's hard to believe she was only three and a half when diagnosed and four years old when she died.

The hurt and the pain do not go away, and it still hasn't gotten any easier. I miss her just as much, if not more than the day she died. Lately, I have been haunted by all the "what if?" questions that seem to flood my mind. Even when she was healthy, it was my nature to second guess decisions, but after having been through a terminal illness and death of a child, I go over and over every decision we made regarding Sophie.

When Sophie was diagnosed, and we were given the prognosis, I believed the doctors when they told me she would only live 6-12 months. I didn't stay positive and think that we could prove them wrong. Initially it was not an easy decision for me to do radiation. My first instinct as a parent was to forego radiation and allow the disease to run its course with the comfort of knowing that we could spend as much time at home with Sophie in her familiar environment. I just wanted her to be happy. I instantly realized that selfishly I wanted Sophie with me as long as possible, but that her ultimate home would be in heaven; a place that I believe is happier than I can even begin to understand. So I struggled with the question, "Why would we put her through this?" if it would only be to give ourselves time with Sophie.

After much discussion, encouragement, and great recommendations about St. Jude, we decided to continue with radiation. Only because then, I changed my thought process to believing that maybe through prayer and a miracle, Sophie might be cured. I prayed and believed that radiation might buy us time to find the cure. It was then that I thought we could prove the doctors wrong.

When radiation did little to shrink Sophie's tumor, and she continued to show symptoms, I felt very guilty that I had put her through all the days of sedation, blood draws, steroids, not being able to eat when she wanted to, our limiting food when her body said she was hungry, torturous baths and the dreaded enema. I wondered if the radiation did an adequate enough job of stunting the tumor growth just enough to give us the time we needed to find the cure.

People tell me "If you didn't do radiation, you would be asking yourself the same questions." That is possible, but I always have a gut feeling about things, and I had a gut feeling that radiation wasn't going to help her. I'm writing from my heart, telling the feelings that a parent who has a child diagnosed with a terminal disease has when forced to make medical decisions with their child's best interests at heart.

After radiation, all the treatments we pursued were in the hope of a cure. When I saw Sophie getting worse, I didn't for once want to prolong the inevitable, but I did think that since we tried radiation we should try the other alternative therapies that we discovered. And although it is obvious that they didn't work, I do believe they made Sophie's physical suffering less. She really never complained of pain in the months after progression. It was only in the last weeks that it seemed she was trying to tell us her leg hurt. But still, we aren't sure. I know that the last hour of her life, with the labored breathing, must have been painful and scary. Her emotional suffering is what I worry about. Especially because she lost the ability to speak the last months of her life, as well as the ability to walk, eat, drink, swallow, and use her arms...things that so many of us often take for granted.

I say to Sophie every day that I am sorry. I am sorry that she was the one who had to suffer. I am sorry I held her arms down so that the nurses could come at her with a needle to put in her chest. I am sorry I gave her so many bites of applesauce with medicine in it that she hated the food she once loved. I am sorry that we had to go away from home to a place that was unfamiliar. I am sorry that we pushed you to walk as much as possible, even though you didn't want to. I am sorry that you couldn't eat what and when you wanted to. I am sorry we had you sit through numerous exams with doctors and nurses asking you the same questions over and over while you should have been playing Dora House. I am sorry you threw up every day and became accustomed to having a bowl at your side at all times. I am sorry you had to suffer. If your true calling was to be home with the Lord, then I'm sorry I didn't let you go sooner.

What comforts me today, even though I am haunted by many of the decisions we had to make, and the suffering Sophie endured, is the fact that she is in heaven with Jesus, and all those who have been welcomed into God's heavenly home.

Please don't forget about the prayersfrommaria.org Sunflower Soiree Fundraiser that is coming up on February 23. All are invited to attend and show your support for the foundation that is dedicated to helping families and finding cures for gliomas. We will be there and hope you will too. If you cannot attend, please consider making a donation to the foundation. For more information please visit www.prayersfrommaria.org/docs/invite.pdf

We thank you for your continued prayers and support. Please pray for the families fighting this battle and for those who have lost children. May God bless you and keep you healthy.

3 Months Without Sophie

2008-01-07T23:47:00.000-05:00

I started this post late Sunday night, and never finished it. I was having a hard time putting my feelings into words, because there are only so many times I can write that I miss Sophie and that losing a child is certainly the hardest thing in the world. A chance to sit and visit with Megan (Maria's Mom) was the perfect excuse to take a break. So I left the post as it was, thinking I would get back to it in a few days when I had something to say. I didn't plan on writing today, but as it often does, the "Purpose Driven Life - Daily Devotional" that I received via email this morning was very thought provoking and indeed provided me with a purpose for writing.

As I sat and talked with Megan, we agreed that it is NOT getting any easier. We talked about our girls, how they suffered and how they taught so many, so much. We commented on how we both reflect back on our time with our girls, and how there is a distinct line drawn in our book of memories. On one side are all the memories of the daughter we had "before diagnosis" and on the other side are all the memories we have "after diagnosis". Even though I never explained the severity of Sophie's diagnosis to her, I am astutely aware of how her knowledge and level of maturity changed after diagnosis. The memories on the side after diagnosis are the ones that are so clear and often the ones I would like to forget. We asked ourselves the torturing question, "What could we have done differently?"

I told Megan about one of the many books I have been reading, called "Holding Onto Hope" where the mother (who also lost a child) says that she finally realized she wouldn't have wanted anything to be different because she accepted that the way things happened was the way God meant for them to happen. I try to remind myself of that every day and really allow myself to be used for God's purpose (just as Sophie and Maria did) so that I may someday get to heaven.

Even though I have my moments of asking the questions "When will I wake up from this nightmare?" and "Why...and How did this happen?" A devotional email can set me straight...at least for awhile. When I read what is written below, it made me stop and consider how I live my life. Obviously I have a long way to go, and I will need to be reminded often. But when I stop to consider how Sophie responded to her situation, I can't help but at least TRY to do "Whatever it Takes"

Below is the email I received. I hope you take the time to read it and consider what it is asking. It really opened my eyes to all the things I am NOT doing.

Tell God: Whatever It Takes, Anytime, Anywhere, Anyway.
by Jon Walker

Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus. (Philippians 3:13b-14 NIV)

~~~ ~~~ ~~~

When Saddleback Church celebrated its 25th anniversary, Rick Warren called for a radical commitment from God's people — all over the world — to tackle the giant obstacles that keep people in spiritual darkness.

In this new year, we can “press on toward the goal to win the prize for which God has called [us] heavenward in Christ Jesus” (Philippians 3:13b-14, NIV). We can, once again, affirm our commitment to the work of the Great Commission. My prayer is that we will view this declaration as a covenant with God, promising him that from now we will do whatever it takes: anytime, anywhere, anyway.

A Call to Radical Commitment

By Rick Warren

Today I am stepping across the line. I'm tired of waffling, and I'm finished with wavering. I've made my choice; the verdict is in; and my decision is irrevocable. I'm going God's way. There's no turning back now!

I will live the rest of my life serving God's purposes with God's people on God's planet for God's glory. I will use my life to celebrate his presence, cultivate his character, participate in his family, demonstrate his love, and communicate his Word.

Since my past has been forgiven, and I have a purpose for living and a home awaiting in heaven, I refuse to waste any more time or energy on shallow living, petty thinking, trivial talking, thoughtless doing, useless regretting, hurtful resenting, or faithless worrying.

Instead I will magnify God, grow to maturity, serve in ministry, and fulfill my mission in the membership of his family.

Because this life is preparation for the next, I will value worship over wealth, “we” over “me,” character over comfort, service over status, and people over possessions, position, and pleasures. I know what matters most, and I'll give it all I've got. I'll do the best I can with what I have for Jesus Christ today.

I won't be captivated by culture, manipulated by critics, motivated by praise, frustrated by problems, debilitated by temptation, or intimidated by the devil. I'll keep running my race with my eyes on the goal, not the sidelines or those running by me.

When times get tough, and I get tired, I won't back up, back off, back down, back out, or backslide. I'll just keep moving forward by God's grace. I'm Spirit-led, purpose-driven and mission-focused, so I cannot be bought, I will not be compromised, and I shall not quit until I finish the race.

I'm a trophy of God's amazing grace, so I will be gracious to everyone, grateful for everyday, and generous with everything that God entrusts to me.

To my Lord and Savior Jesus Christ, I say: However, whenever, wherever, and whatever you ask me to do, my answer in advance is yes! Wherever you lead and whatever the cost, I'm ready. Anytime. Anywhere. Anyway.

Whatever it takes Lord; whatever it takes!

I want to be used by you in such a way, that on that final day I'll hear you say, "Well done, thou good and faithful one. Come on in, and let the eternal party begin!"

What does this mean?

Today, I affirm this commitment to God and submit to his plans and purposes for my life, no matter what it takes.

________________________________

Signature

________________________________

Date

© 2007 Jon Walker. All rights reserved.

If you feel the calling to help those children and families dealing with the crushing diagnosis of a brain tumor, I urge you to consider helping with the Prayers From Maria Foundation Sunflower Soiree Fundraiser that will take place in Cleveland on February 23, 2008. This is an event designed to raise awareness as well as lots of money so that the foundation's purpose of "Helping Families, Finding Cures" will be fulfilled. The foundation is currently seeking corporate sponsors, as well as donations of big ticket items for the auctions. If you are able to help in any way, please consider visiting the prayersfrommaria.org website. Here is a list of the types of items they are looking for.

Art work
Autographed sports items
Babysitting services
Chef to cook for you and your guest
Cleaning service
Creative memories basket
Dance classes
Fitness center membership, Five Seasons, Bally's, EMH, YMCA,
Four seasons of flowers from florist
Gift baskets
Gift cards/certificates for restaurants, stores, salons, hotels, etc.
Golf clubs
Golf outings
Gymnastic classes
High school football tickets
Hotel overnight stay
Interior design session
Jewelry
Karate classes
Kids birthday parties, My Gym, Pump it Up, Bowling, Chuck E Cheese, etc.
Lawn service
Massage service
Movie rentals
Movie tickets
Pampered chef basket
Personal trainer
Photography photo session
Pizza certificates
Salon services, manicure, pedicure, haircut & style, facial,etc.
Sporting event tickets
Sports memorabilia
Tanning sessions
Tastefully simple basket
Technology equipment, Ipod, Tivo, Camera, laptop, etc.
Theater tickets
Vacation packages, homes, cottages, boat trip, ski trips, etc.
Wine tasting for ten, bottles of wine

And of course your attendance is a great way to show your support. For us, the timing will be bittersweet as Sophie's date of diagnosis was February 21, 2007. When I look back to February 23, 2007, we were at Rainbow Babies and Children's Hospital making decisions about how Sophie would spend the remainder of the time she had left on Earth. And at the time we were certain that if we did radiation she would most likely make it to Christmas, but instead it's already been 3 months that she has been gone.

Please, consider helping with this fundraiser if you are able.

For us personally, December has come and gone, and now a new year is upon us. We missed Sophie so much during the holiday season. It's difficult to do the things we did when she was here with us. We had Marc's work party here at our house (as we have had in years past). Sophie was always a part of the party, so we all missed her. A group of us played the game "Catchphrase" (something we hadn't done in years past), and it was obvious that Sophie was indeed present at the party when the clues, "rainbow" and "4th of July" came up. We continue to get signs from her, especially the appearance of 11:11.

Taking down the decorations was tough...maybe even harder than putting them up. It was a rough couple months, but somehow we survived our first Christmas without her. Florida was a much needed distraction; it was good for us to get away. The weather was perfect with the first 4 days being sunny, and although it rained on Christmas day, I saw periods of sun peeking through the clouds, and I just knew that somewhere there was a rainbow. I wouldn't have had it any other way. Sarah had a great time, so we're considering making a trip in December a yearly tradition.

It's strange to think that the year 2008 will be the first of many years in which Sophie will not be with us here on Earth. When I think back to January of last year, I remember Sophie beginning to show signs of her tumor, even though we didn't know they were signs then. She was more tired, and a little grumpy and didn't want to do the daily things she had always done. It is so sad to look back and wonder what was going through Sophie's head, as her body and mind slowly began to fail her. From this point on, I won't be able to look back at "this time last year" and have memories of the Sophie we knew before diagnosis.

Still we press on, mostly because we have no choice, and because our Sarah needs us. We hope and pray every day that another child and family will not have to endure a year like we did in 2007.

We thank those of you who remind us that you are thinking of us by posting to the blog, calling, or by sending us cards and/or emails. It really does mean something to us that you haven't forgotten Sophie, and that you are aware of what a struggle this is.

May you find many blessings in the New Year.

Two Months Without Sophie

2007-12-06T21:41:00.000-05:00

Another anniversary...aren't anniversaries supposed to be "happy?"

We thank all of our friends and family who have continued to provide support since Sophie left our world just two short, yet very L-O-N-G months ago. We have spent the last couple months trying to figure out how we can go on without Sophie. It certainly has been difficult, if not impossible, to adjust to the emptiness in our home. We faced the loss of Marc's Grandpa who succumbed to cancer after a very short battle. Two deaths in one family in just over a month really take a toll on one's psyche.

We spent Thanksgiving here at our home - just the three of us. We ate honey baked ham and frozen side dishes. It was relaxing, and what we needed, but my mind wandered often to the thought of Thanksgiving 2006 when we hosted my family here. Sophie was so excited to set the table and line up all the silverware and dishes. And then she was even more excited to place the little candle centerpiece she had made at Little Learners, on the table. I am going to keep that "centerpiece" forever.

We have been decorating the house for Christmas, little by little. And although it is hard to do without Sophie, it is something that she enjoyed and appreciated very much; so we're digging out as much as we can in her honor. When I was up in the crawl space sorting through rubber maid tubs, I came across the pink mini golf clubs that I had bought on clearance after Christmas last year. We were saving them to give to Sophie this Christmas. Marc was so excited to take her golfing with him. I also found the ornaments that Sophie had made last fall in preschool. One has a picture of the two of us on her first day of school on the front, and on the back, it says, "I'm thankful for you!" It's moments like those, that my heart just stops beating and I loose my breath.

We've decided to take a short vacation to Florida over Christmas. We think we will fare better emotionally if we don't wake up here in our house, without Sophie to come down the steps to see if Santa is still there. (Last year she was nervous to come down because she thought he might still be there!) We're fortunate that Sarah is young enough to not need an explanation.

My sister Sarah and I took my little Sarah to put a wreath at Sophie's grave. When I go and "visit" Sophie, the reality of the situation is overwhelming. Sometimes I can't believe that my little "Sophie Girl" was diagnosed with a brain tumor nine months ago and now she is gone. It seems surreal that I am there visiting my four-year-old's grave. I still find myself somehow believing that one morning I really will wake up and find this while thing to have been just a nightmare.

So that's how we are down here on Earth, while Sophie is in heaven happy and wishing we could be too. She continues to send me winks from her special place over the rainbow. I have seen more pictures of rainbows in books, magazines, catalogs, billboards, trucks, the Internet, you name it then I ever remember seeing. I visited Sophie's grave with Marc's Mom and sister on November 13th. While we were standing over her grave, a tiny yellow butterfly fluttered by. I don't know about you, but seeing butterflies in northern Ohio in November has never happened to me before. I know she sends me those winks to say "Hi Mommy," and to let me know she is smiling.

I sent a note to my CRHP "sisters" in Cincinnati a couple weeks ago thanking them for a memory candle that I placed in the center of my Advent wreath. In the letter I mentioned the fact that Sophie will be at the real birthday party on December 25th. That thought pops into my head many times each day, and brings a smile to my face. Sophie loved parties, dressing up, decorating and celebrating. I know that being at Jesus' birthday party in heaven is a great reward for the suffering she did on Earth. Each day I remind myself that I need to somehow, someday get to that party.

We thank those of you who continue to make donations to St. Jude in Sophie's name. We are honored that you are supporting this facility that offered us so much during Sophie's illness.

Please please continue to pray for those families fighting this battle. I know I've asked before, but I am asking for prayers again. There are children being diagnosed every week with this disease and all will be given the same prognosis we were. We really need to raise awareness so that a cure may be found. My prayer and wish this Christmas is that someday in the near future, you will see as many gray ribbons as you do pink, and that somehow a cure will be found. Please also pray for those families whose children will lose their battle. It breaks my heart to know that more families are facing the devastating pain that we feel.

We are continuing to work on the changes to Sophie's site, and to figure out the best way to honor her memory. I guess it will be a memorial in the making. I have an idea of how I want it to be, but getting there is a longer process than I thought.

Below is a video clip of Sophie that I found while trying to organize all the "stuff" on my computer. It is how I remember her, and the precious voice and spunk she had.

God Bless you and your families this Christmas. Hug those children in your lives, both young and old, and count your blessings.

One Month Without Sophie

2007-11-06T20:20:00.000-05:00

Tonight at 11:55pm it will be one month since our dear Sophie left this Earth to receive her miracle from the One true healer. At times it seems like it was just yesterday that she was here with us, and at others, it seems like it has been forever since we have seen her beautiful face, and heard her adorable voice.

I wish I could say that this grief process is easier that I thought it would be, but in fact, it is much harder. We've had to come up with answers to two common questions, "How are you?" and "How many kids do you have?" Simple questions with usually simple answers have left me speechless. The memories that people say "can bring you comfort" are the very things that take my breath away and leave a pit in my stomach. Believing and knowing that Sophie is happy and healthy is the easy part, but missing her is the hard part. Everything I do and everywhere I go, I am reminded of Sophie. Her shoes and clothes in the closet, her pictures all around the house. Her toys and wheelchair in the garage. Her huge sticker collection still in the drawer. The food she loved still in the pantry. The places she loved to eat, the stores where she loved to shop, the places she loved to go. I find myself walking outside with Sarah and seeing a stick, a leaf, an acorn or a pinecone and thinking, "Sophie would defintiely pick that one up."

The lives of those around us have continued to go on as usual. Some people have said, "At least you have Sarah to keep you busy." I wish busy was what I needed right now, but the truth is, being busy doesn't do anything to fill the void. When Sophie was sick, I missed how she was when she was healthy, and now I'd give anything to spend another day with her - healthy or sick. I realize that the next time I will see Sophie will be in heaven. She has set the bar very high. Now I have no choice but to try and live my life in a way that will get me to the place that was a "given" for Sophie.

On Halloween afternoon I said to Marc, "I'm sad today," and he said, "Me too, I'm trying not to look at the Halloween picture from 10-31-06 that we still have framed in the kitchen." I went on to get dinner ready and then the phone rang. It was Megan (Maria's Mom) calling to ask me if I had seen the rainbows. I didn't think I heard her right, and she told me to go outside and look. She told me to hurry because the sun was starting to go down and there was one rainbow on each side of a very bright sun. I went outside and looked for the sun. I couldn't see it behind the trees, so I had to cut through the bushes to Megan's house where I could see the sun. And there low in the evening sky were 2 very faint rainbows; one on each side of the sun, peeking through a break in the wispy clouds. We both remarked how we had never seen a rainbow without rain, but took it as a sign from the girls that they were with us on a night when we really missed them.

In the next few weeks, I am hoping to have Sophie's website updated so it will be more of a memorial to her. We have plans to join with the McNamara's foundation - prayersfrommmaria.org - as a way to "help families and find cures," while at the same time preserving a legacy in Sophie's name that focuses on the "helping families" portion of the foundation. We are open to your ideas and suggestions on how to make this work, and of course we welcome any suuport that you can provide.

As Thanksgiving approaches I reflect on what I do have to be thankful for. In addition to my family, friends, and my health, the one thing that I'm particularly thankful for this year is my faith. I look back and wonder how I would have gotten this far without it. All those Sunday mornings in church with Sophie were some of the best days; it was a time for me to hold her in my arms in God's presence. What could be better than sharing faith with the ones you love???? My prayer tonight is that all of the people who are lacking a faith or direction in thier life, will be open to hearing God's voice and be blessed with the faith that has become a part of my every being.

We thank those of you who have continued to provide support and prayers, and we ask you to pray in a special way for the families being diagnosed and/or fighting this horrific battle during the holiday season.

Somewhere Over the Rainbow

2007-10-14T21:10:00.000-05:00

I wanted to take a minute to post this amazing picture. It was taken on Wednesday, October 10, 2007; shortly before Sophie's first visitation was to begin at the funeral home. This picture was taken by our good friend Ed McNamara (who lives behind us). From this vantage point, the rainbow ended at our house (the trees you see in the picture are in our backyard). If you look closely, you can see there are two rainbows - I believe one is Sophie and one is Maria.

While Ed was taking this picture, Marc and I were on our way to the funeral home and also looked out the car window to see a beautiful and perfect rainbow starting over the lake and ending in the road before us. All I could say was, "oh Sophie Girl!" If you read my recent update, you know how Sophie liked rainbows. We know she is in heaven and that provides us peace and some comfort, but the pain and emptiness in our hearts is indescribable.

Updates will come as we find the time. Many people have asked us "what happened?" and what the final moments with Sophie were like. I'm sure as time goes on, I will post this update and answer those questions. I'll also ask my Mom to post an update of all the stories she wanted to tell about Sophie. But for now, I will try to find a way to fill the emptiness in my heart while embracing the memories of Sophie which surround me at every turn.

We want to thank you again for your love, friendship and support. We will hold Sophie close in our hearts forever, and will pray that this experience will never happen to another family and that somehow a cure will be found. God bless.

Funeral Home Directions

2007-10-08T20:57:00.000-05:00

Many questions about the locaton of the funeral home from those coming from out of town. The zip code shows Rocky River, but it is actually Fairview Park. If you go to the website below you can actually put in your starting address and get directions.

http://www.buschfuneral.com/aboutus/obits.html

Thanks again for all the support. You should see the beautiful luminaries surrounding my driveway and sidewalk. Sophie is surely smiling down on us.

God Bless.

To Celebrate Sophie

2007-10-08T06:12:00.000-05:00

We want to thank you for the kind words you have shared, and for the food and drink that has been already brought to our home. The candlelight prayer service outside our house last night was beautiful and touching. We are truly truly blessed and humbled by your love and support and we invite you to celebrate Sophie's short life on Earth with us.

The visitation will be:

Wednesday October 10, 2007 6:00-9:00pm
Thursday October 11, 2007 2:00-4:00pm and 7:00-9:00pm

Busch Funeral Home
21369 Center Ridge Road
Fairview Park, OH 44116
(440) 333-9774

Sophie's Mass of the Resurrection will be held:

Friday October 12, 2007 10:00am
Holy Spirit Church
410 Lear Rd.
Avon Lake, OH 44012
(440) 933-3777

Many have asked if "pink" is the theme, (if there is such a thing at a funeral) and although Sophie did love pink for the first couple years of her life, she spent the last year or so really embracing all the other colors, and when recently asked her favorite color, I remember her most as saying, "I like them all." She always had a fondness for rainbows and I remember my Mom teaching her the acronym Roy G Biv as a way to remember the order, when she was only 2 years old. So just as Sophie was accepting and loving of all the colors in her life, I invite you to appreciate all the colors in your life and think of Sophie each time you are blessed with the sight of a rainbow.

Donations can be made in Sophie's name to

St. Jude Children's Research Hospital
Sophie Quayle's Tribute Account #18236053
501 St. Jude Place
Memphis, TN 38105
Attn: Matt Oates

or to

Holy Spirit Catholic Church
410 Lear Rd.
Avon Lake, OH 44012

In God's Arms

2007-10-07T08:58:00.000-05:00

And so it was...the period of clarity we were warned about.

After what seemed like some better days, our sweet little Sophie went to be with Jesus on Saturday October 6, 2007 at 11:55 pm.

She died in my arms with Marc right next to us. We believe she went peacefully and without pain. We didn't see it coming, but we realize "we do not know the day or the hour."

Sophie is tumor free with the angels and saints in heaven. We thank God for the days we had with Sophie. Who would have thought she would teach us so much in such a short time.

We ask for prayers of strength and comfort. Funeral info will follow.

October 4, 2007

2007-10-05T22:59:00.000-05:00

I went to the carnival fundraiser on Saturday and it was so fabulous that I can't believe I didn't get right to this update! We haven't been able to attend many of the fundraisers that have been held in Sophie's honor but this one was so close, and the timing was good so we went. I took little Sarah there for a little while and she loved it. She didn't want to get off the pony so they let her go again.

When I brought Sarah home for her nap, I convinced Marc to take Sophie. We've been a little apprehensive about taking her out in public because she was on the shy side before all of this, and now that she can't talk we are never sure if she feels comfortable or if new environments make her nervous. So at first Marc looked at me like I was crazy, but when Sophie nodded that she wanted to go, off they went. Now I wasn't there to see it, but my parents were and my Mom says that if Sophie could have smiled, she would have, and that her eyes lit up. Marc took her on the pony - after some resistance- and she painted a pumpkin. She did throw up while there, so that was difficult for Marc, but overall she enjoyed her short stay. And who wouldn't? It was really a phenomenal effort and for the kids too; throughout this journey, we've learned that there is nothing greater than the smile of a child.

I want to thank the six girls and fellow Avon Lake Preschool PTA members who planned, organized and executed the whole thing: Kim Walters, Elizabeth Gedeon, Andrea Bucci, Stacey Green, Staci Starr, and Michelle Polinko. I also want to thank all the other volunteers who helped work, plan, solicit, bake, donate and participate in the event. We thank Fr. Beatty and the employees of Holy Spirit church who provided the space for the event. After attending the carnival I couldn't believe that we actually attended all the churches in the area to make sure we picked the best one...Holy Spirit now seems like a no brainer - we love Holy Spirit, and not just because they shared their space, but because of the wonderful people we have met there and for the astounding prayer support we have received.

I got to the carnival thinking that I would be able to go around and talk to people and thank them personally, but after talking to a few, I realized that I was getting too choked up, so I decided to just enjoy the moment with plans to express our gratitude through this website. Again, we are overwhelmed by the outpouring of love and support from people all over Ohio and all over the country. We know we are blessed by God and we feel His love through all of you.

I know you are waiting for the part about Sophie..and I wish I could write that she received the miracle; maybe she has, and maybe she hasn't but we aren't giving up hope.

When I last updated she was having increased difficulty swallowing and was struggling to even open her mouth. We resorted to the use of a medicine dropper to get her some fluids and jello was the only "solid" she could eat. All her other symptoms seemed unchanged, but really couldn't have gotten any worse.

Since Sunday, Sophie's ability to swallow and open her mouth have improved slightly. This morning she took her first few sips from a cup and actually gulped them down. This week she has eaten things like soup, cereal, potatoes and small bites of chicken and has been able to very slowly, and with the help of some liquids, move them to the back of her mouth and swallow them. As of recently, we have been able to open the fingers and thumb on her right hand (the weak side) and also raise her arm above her head and straighten her elbow. She doesn't have the ability to do this on her own, but before, she was so stiff that we couldn't pull hard enough to move her. Same with her leg, I remember on Labor Day, her leg was so stiff and tight that I couldn't even bend her knee. Now it is much easier for me to bend, and she can keep it in a bent position until I move it again. So, of course we are ever hopeful that this machine is helping and Sophie is on her way to restored health, but we are also ever so cautious of the warning that there is often a "period of clarity" that presents itself before the tumor rears its fierce head and patients have their final turn for the worse.

Sophie has been trying to eat more, but unfortunately she has been vomiting a lot more in the past few days; as much as three times a day. Of course, this is concerning to us, because the vomiting indicates a change in pressure - usually from tumor growth - although the hospice nurse did say that any change in the tumor; an increase or even a decrease in size can change the pressure within the head causing vomiting. We pray that we could be so blessed with this second scenario.

Sophie has been having more difficulty sleeping, reminiscent of about a month ago, where she would wake up in the middle of the night, say 2:00am and stay awake until 4:30am. We aren't sure if it is pain that is waking her up. When the hospice nurse came on Monday, the report was that all Sophie's lung and heart sounds are normal and clear. She explained some ways that I would be able to tell if Sophie is experiencing pain; like flushed cheeks. We still ask Sophie many times throughout the day if anything hurts, and recently she has been giving us a thumbs up, but when we ask her to point to what hurts, she isn't so clear. At times it seems as though she is trying to tell us that her left leg hurts, but still we aren't sure because her answer always changes.

Today Sophie was more tired than usual. Her eyes appear to be very tired and most of the day she has a tough time keeping them open. She was pretty content staying in bed, but we did mange to get her outside for a short walk. Sometimes her eyes seem a little glassy, but they are definitely not permanently crossed anymore. At one time you could not see any white at all in the corner of the left eye, and very little in the right. Now, white is showing in both, and just today she was looking up as Marc threw a ball up in the air. It's so hard to know what is going on; we have seen small slight positive changes, but it doesn't change the fact that she is unable to walk, or talk, or support her own body wait by sitting up, let alone by standing.

We continue to pray and hope Sophie will get her miracle. We know God is capable of the miracle, and our prayer is that it is God's plan to grant Sophie the miracle. There are more and more children dying each month as a result of this tumor, so the hope and chance that Sophie will be the only one spared seems like one in a billion. But we won't give up on God, as we know He never gives up on us.

We are grateful for everyday we have with Sophie and know that she truly is a gift from God. Tonight I got a thumbs up after I told her "I love you." and right now that's about as good as any smile I could want to see.

I stumbled across this poem, and thought I would share it in hopes that all of you parents, grandparents, aunts, uncles and everyone else who has a special child(ren) in their life, would be inspired by our journey with Sophie and accept each day as a gift to be spent and cherished with the ones we love.

Just for this Day...

To my child...

Just for this morning, I am going to smile when I see your face, and laugh when I feel like crying.

Just for this morning, I will let you choose what you want to wear, and smile and say how perfect it is.

Just for this morning, I am going to step over the laundry, and pick you up and take you to the park to play.

Just for this morning, I will leave the dishes in the sink, and let you teach me how to put that puzzle of yours together.

Just for this afternoon, I will unplug the telephone and keep the computer off, and sit with you in the backyard and blow bubbles.

Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck, and I will buy you one if he comes by.

Just for this afternoon, I won't worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned.

Just for this afternoon, I will let you help me bake cookies, and I won't stand over you trying to fix them.

Just for this afternoon, I will take us to McDonald's and buy us both a Happy Meal so you can have both toys.

Just for this evening, I will hold you in my arms and tell you a story about how you were born and how much I love you.

Just for this evening, I will let you splash in the tub and not get angry.

Just for this evening, I will let you stay up late while we sit on the porch and count all the stars.

Just for this evening, I will snuggle beside you for hours, and miss my favorite TV shows.

Just for this evening when I run my fingers through your hair as you pray, I will simply be grateful that God has given me the greatest gift ever given.
I will think about the mothers and fathers who are searching for their missing children; the mothers and fathers who are visiting their children's graves instead of their bedrooms; and the mothers and fathers who are in hospital rooms
watching their children suffer senselessly, and screaming inside that they can't handle it anymore.

And when I kiss you goodnight I will hold you a little tighter, and a little longer.

It is then, that I will thank God for you, and ask Him for nothing, except one more day...

-Sally Meyer copyright 1999

We thank you for your endless prayers and support. We ask that you continue to pray. I'm heading up to give Sophie a long hug and tell her I love her. God bless.

Ways You Can Help...

2007-09-28T18:34:00.000-05:00

The other night when I posted I forgot to mention a couple things that I intended to include. As a parent watching my daughter fight this battle I have this incredible urge to do something that might help another family with a terminal child. Unfortunately because of the amount of time I have spent caring for Sophie in the past six months, I haven't been able to get up and running with my ideas. Many people have asked me many times what they could do to help, and I usually don't know what to say. Or I have had many people say, "I wish there was something I could do." Now there is! I am doing my best by giving all you wonderful and caring people an opportunity to help and raise awareness through the efforts of some other parents who have fought, or are fighting this DIPG battle. If everyone does one small thing, it could turn into a big step in finding a cure so that no other family will have to go through this. Honestly, I wouldn't wish this on my worst enemy...that is if I had any enemies!

The first way you can help is by visiting www.prayersfrommmaria.org and purchasing something from he gift shop or making a donation to help support their cause in fighting gliomas. Or you can visit www.thecurestartsnow.org and donate to their DIPG fighting fund or find other ways to help. Or, for those of you who like to buy things for other kids, visit http://www.helphannah.org/Page.aspx?id=19 and read about a family who is collecting toys for Christmas in honor of their daughter with a DIPG. Their goal is to collect 1000 toys to distribute to kids through their hospice organization. Since I'm not organized enough to raise awareness on my own, I thought the least I could do was pass this information on to all of you.

So how is Sophie? I wish I had a better answer, but we've actually seen some decline the past few days. She is having more trouble swallowing liquids; to the point where she coughs with each attempt at a small sip. I have been using a straw to drip small amounts into her mouth, and this seems to help a little. She still has a good appetite which bothers me because I wish she could just take a big bite of a chicken nugget like I know she wants to. She's been surviving on jello and softened Life cereal. It takes about 45 minutes of small bites on a baby spoon to get a 1/4 cup serving through the centimeter gap between her teeth. At time she thinks she is opening her mouth, but her teeth will be clenched shut. We may have to revisit the idea of the feeding tube so she won't have to suffer the feeling of being hungry.

She has been taking more naps in the last couple days, and sleeps pretty soundly when she is sleeping. Her nights have been better; although I am not sure if that is a good thing. At times I look at her and she seems to be staring off into space, and I have to repeat myself many times before she will answer me with a nod or a thumbs up/down. Marc says it is like she is trapped inside her head. I think of all the things she would be saying if she could talk, and it makes me realize that I can hardly remember what her voice sounded like.

She has been interested in books lately, and will sit and listen to a few stories at a time. This makes interacting with her a little easier, because for the most part it's hard to find things to say to her. Have you ever tried to carry on a conversation with someone who couldn't respond? Aside from reading, I have been singing little songs to her and telling her how much I love her. I also tell her about all the other people who love her too, and sometimes I share silly stories about baby Sarah (who we all call Yahoo). I try not to say too much because I'm not sure if Sophie feels sad that Yahoo can run circles around her and do way more than she can.

My parents took Yahoo home for a couple days and it's been very quiet around here. It makes this whole ordeal even more sad when I look at my 4 year old who should be making a racket, yet she sits in silence with her head slumped over as though she is not there. I continue to use the PER machine with Sophie because I haven't given up on her. I still believe she is not in pain and that is the best thing. Our hospice nurse canceled our visit on Thursday because of an emergency so I don't have a report on her vitals. We should know on Monday if everything still sounds good.

Please continue to pray for Sophie; that she may be pain free and if it's not too much to ask that this horrible tumor be removed from her little head! We thank you for your support and prayers.

Cut-A-Thon at Enzo's

2007-09-25T10:36:00.000-05:00

Posting the flyer has been a bit more difficult with this one due to formatting issues, but I wanted to be sure to get the information on Sophie's site so you all would know about another upcoming fundraiser.

What: Cut-A-Thon

Where: Enzo's Salon and Spa
32848 Walker Rd
Avon Lake, OH
440-933-3669

When: October 7th, from 12-6 pm

Details: Enzo's staff will be offering haircuts and styles, eyebrow waxes, chair massages, and hand and arm massages.

There will also be several items up for raffle.

Swingo's Tavern will be there to make sure you don't go hungry!

Services will be provided on a walk-in basis.

There is no minimum donation but 100% of the proceeds will go directly to the Smiles for Sophie Fund.

Thanks to DJ Victory, the owner of Enzo's, and the staff at Enzo's for donating their time and talent to help Sophie. Thanks also to Staci Starr for getting Enzo's involved.

I know there have been some people asking about donating items, so if you can't make the cut-a-thon, but would like to donate items toward the raffle they will be having, please contact the salon at the above number.

Thanks again to everyone for your generosity and support.

Love,
Sarah

No news is good news?

2007-09-24T22:35:00.000-05:00

Well, it’s almost been a week since I returned home to Florida and it sure is quiet around here. I talked to Emily last night and she asked me to post another update. I know I can’t quite say things like Emily does, but I know so many of you check the site daily, looking for any news on Sophie. I will try my best to provide this update.

The last time I was at Emily’s was last Tuesday and then before that on the previous Saturday. Saturday, Andrea, Aunt Margaux, and I spent the day with Sophie and Sarah so Emily and Marc could get out for a bit. And that day was a great day! Andrea, Sophie, and I played with her dishes and food three separate times and she even laughed a little as Andrea and I did our best to be crazy and brighten her day. It is such a wonderful thing to see…when Sophie laughs! She does tire very easily and really would prefer to sleep with Emily, but I did manage to get her to take a little nap with me while Emily and Marc were gone. As Emily described in her last post, Sophie is so loving. When I walked in that day she was reaching out for me, wanting to hold my hand and give me a hug. Then as we lied in bed, she continued to reach out from under the covers for my hand. She always wants to have somebody sitting right beside her, most times holding hands with whoever it is. Although she is going through so much and has changed so much physically, that big heart of hers hasn’t changed a bit!!

As for her symptoms, like Emily said last time, they remain relatively unchanged from day to day. The one thing I really noticed when I came back that Saturday after having been up in MI for about a week prior was that her weight seemed to have decreased significantly. Lifting and carrying Sophie is difficult, as she was up to 54 pounds, but also because she really can’t help much at all. Since she only has the use of her left arm, she can only grab on around your neck and doesn’t always even do that much. Her trunk control is still shaky so you have to have a good hold on her. But I noticed she was much lighter than the last time I was there. Of course that is attributed to her decreased eating and weaning of the steroid. She has a lot of difficulty with eating, as she can’t really feel food when it’s in her mouth and it often gets “lost” in between her teeth and lips. She continues to signal she is hungry throughout the day by rubbing her tummy, but only really eats about 1-2 bites before getting too frustrated to keep trying. Emily has mostly been trying soft foods with her, like mashed potatoes, Jell-O, softened Life cereal, rice, and even tried to give her Sarah’s baby food, but Sophie was too smart for that. Emily told her it was just mashed up pears, but Sophie wanted nothing to do with it. As before she has good days and bad days with the vomiting. The couple days I was there, she didn’t get sick at all, but then she has days where she not only vomits in the morning but many times throughout the day too. Sophie would prefer to stay inside but Marc and Emily have continued to get her out for a walk on most nights.

Treatment wise, from the conventional medical front, Sophie had an appointment with Dr Jacobsen, her initial oncologist from Rainbow Children’s and Babies Hospital in Cleveland. It was July 25th the last time Dr Jacobson saw Sophie, and after evaluating her, he confimred the progression of the tumor by the onset of the symptoms, and told them that he would be happy to see her as much as they would like, but as always, told them there was nothing from the medical standpoint that he could do to help Sophie (cure her tumor). They have not done any additional MRIs and don’t plan to at this point. They were told that there are many risks involved with sedation when a patient gets to the point in progression where Sophie currently is. They also discussed the nutrition issue with Dr Jacobson due to Sophie’s decreased food intake. His opinion was that she still has excess weight to sustain her (she weighed 48 pounds) so a feeding tube was not recommended - again because of the risks. She still needs nutrients but is not getting them by eating, so Emily bought some Ensure to hopefully keep Sophie as healthy and nourished as possible in order to help keep her strong to fight this tumor.

Emily and Marc continue to pursue any and all alternative treatments that may lead to Sophie’s miracle.

Having been there for about a month and witnessing what Emily and Marc go through everyday, the care is very physically and emotionally exhausting and demanding. Marc’s parents spent Labor Day weekend with them and my parents and I went home to MI. Leslie also came for a couple days during that weekend and Marc’s parents have been back again. Emily and Marc have been trying to make arrangements so the help stays for just a few days at a time, or even just for the day, like her friend Andrea. It’s hard for them to have people always in their house, 24/7, but the help everybody provides is much needed. Aunt Margaux has been a Godsend with baby Sarah. Although she started back to work after Labor Day, she still comes over most days after work and for a few hours on both Saturday and Sunday. Baby Sarah loves the walks and the many trips to the park with Aunt Margaux, and it gives at least Emily or Marc a slight break at home. Emily has arranged for a hospice volunteer to come in two days a week for a couple hours to play with baby Sarah as well. They are trying to find other sources of help so the parents don’t have to commit to all day everyday for days and weeks at a time. It’s hard, but everybody is doing their best to give Sophie all the support and love that she needs.

Finally, as a reminder the Kiddie Carnival is coming up at Holy Spirit church in Avon Lake on September 29th. It looks as if it’s going to be another wonderful fundraiser for Sophie and, as always, Emily and Marc are truly grateful for the generosity and support. They have truly been blessed with such wonderful family and friends who have gone above and beyond to help them provide every option to fight Sophie’s tumor. Please continue sending your prayers and love their way!!

Love,
Sarah

Now it is me, Emily and I am continuing this post that my sister started 2 weeks ago! She wrote the post, and all I needed to do what read it to make sure the facts were straight and I haven't even had a chance to do that! Since I am at the computer I will take a few minutes to update on Sophie and her treatments and condition.

Sophie completed 45 of the "alternative chemotherapy" DMSO treatments that we started in Tulsa. Thursday was her last treatment, and although her blood work was good enough to continue, we decided that we, and Sophie, had given that course of treatment her best shot. We did not see the results we had hoped we would. So of course we were disappointed. When we were told that most patients see some results as early as treatment 6, but on average 19 or 20, we felt at peace with the decision that 45 treatments gave it a fair chance to work.

Right now her condition really hasn't changed, but like I was telling my friend Andrea, there isn't much else that can change at this point. She can't walk, talk, use her right side arm or leg, smile, see with her left eye, laugh, sit without support, hold her head up, and as of late has been having increased difficulty chewing and swallowing. It sounds negative, and I'm not trying to be, but really there isn't much to say about her physical appearance that would be positive.

Her lung sounds continue to be clear, and for that we are grateful, hoping that we will be given more time to find the method to Sophie's miracle. Right now we have a PER machine here from California that we are using 4 times a day for 12-20 minutes. The machine has been shown to put cancer cells into remission by normalizing the voltage of the unhealthy cells. We started this last Sunday and haven't seen changes in Sophie's physical symptoms but overall her appetite has been better, and it seems like she can open her mouth a little wider when she isn't so tired, and get some food with a little more substance down, and keep it down. Thursday she managed to eat a half a piece of pizza at one sitting and she's eaten some small bites of chicken too. Her vomiting has been better so maybe the pressure is stabilizing. She typically goes a few days without getting sick. I was thinking the other day how sad it is that we must sleep with bowls in our bed just in case, as well as carry one from room to room and in the car. Poor Sophie.

At times her energy seems better and she'll be interested in stickers or a book, and lately she's wanted to watch some TV again, but mostly she prefers to be in my lap getting a foot rub and holding hands. Her nights have been better as she seems to be sleeping more soundly. Instead of waking up 4-5 times a night, it has been closer to 1 or 2 the past week. Although she has been steroid free for over a month now, she seems to be having some of the attachment issues that we thought were all related to her being on the steroid. She only wants me to do everything for her. It can be frustrating for me, but also for those who come to help. It would be easy for a visitor to simply ignore Sophie, but my parents continue to talk to her and try to engage her in some type of activity. Just this morning my parents arrived with all sorts of princess and Halloween stickers and crafts! So my parents and Marc's parents, Margaux and Andrea continue to do all the things I cannot do because I am with Sophie. Things like care for Sarah, cook, clean, laundry, grocery shop, yard work, decorate my house, run errands and just about anything else. For that we are both so grateful. This has also given Marc the ability to continue to work and stay current on the things that are happening with his job.

We have been taking Sophie outside each day, and although she resists by shaking her head a little and moaning and pointing to the house, we still do it. The weather has been absolutely gorgeous so we are making the most of it before it turns cold.

We received word today that Marc's grandpa Bill Quayle had an MRI because he was experiencing shortness of breath, pain near his ribs, and swelling. The MRI showed cancerous lesions on his spine, with a preliminary diagnosis of bone cancer. We should hear more test results later this week. Please pray for Grandpa and that there will be a course of treatment that will cure him.

Dr. Jacobsen had the nerve to tell us that we have a couple months at best left to spend with Sophie. And I say nerve because I want so much to prove him and all the doctors wrong. Please please continue to pray for a miracle that will make Sophie healthy and happy once again. Actually I want her to be happy and feel good. Andrea and I took Sophie to the Disney store this Sunday hoping that she would enjoy shopping for just about anything she wanted. And because she can't talk, or smile or show emotion I just wasn't sure she was loving it. Andrea told me, "I bet she's happy on the inside." And that is what I really want most for Sophie; happiness. So I try to go through the day stopping to hug her and cuddle her when she reaches out for me as I walk by with a load of laundry in my arms. I must remind myself right now all that matters is my precious little innocent girl who is going through more than anyone should have to. I can't help but feel so bad for her.

Again, we thank you for your continued support and prayers, especially to those of you who do the unexpected; surprising us with mums and fall decorations - thank you Wassim, Stepahnie and Tiffany, bringing us dinner, sending us cards, planning fundraisers, making donations, and even more thanks to those of you who do what we need most, and that is sending prayers and happy positive thoughts our way. I often wonder how we would have ever survived thus far without all the love and support we have been given. Thank you and God bless you.

Kiddie Carnival

2007-09-07T10:07:00.000-05:00

Here is the latest information on an upcoming fundraiser for Sophie in Avon Lake. It is a Kiddie Carnival on Sept 29th, from 11-4, at Holy Spirit Church. The flyer for the carnival is above and is also posted in the events section on the right side of this page. Many thanks to Kim Walters, Elizabeth Gedeon, Andrea Bucci, Staci Starr, Michelle Polinko, Stacey Green, the Holy Spirit Parish, the Avon Lake Preschool PTA, and all other volunteers for putting this fundraiser together. Again, the outpouring of generosity and support for Marc, Emily, and Sophie is truly amazing!!

Love,
Sarah

6 Months and Counting

2007-09-04T20:12:00.000-05:00

It seems that time gets away from us. Quite ironic because the one thing I wish I had more of right now is time. This picture was taken exactly one year ago, and I can't even begin to imagine how things would have been different had we not been thrown this "curve ball" (as my brother says.) Sophie should be back at preschool...

On a day to day basis, it seems that Sophie's condition is unchanged. But then when I stop to think about how different she is from 2 months ago, it's obvious how the tumor is progressing.

I want to remain positive so posting these facts and symptoms is hard. Regardless of how she is digressing, we ask that you continue to pray for her in hopes that she will still receive her miracle. Fr. Beatty came last week and anointed Sophie again, and we had a mini first communion service. Unfortunately Sophie didn't take the communion, but we still have it here waiting for her to let us know she is ready.

I am still exploring other alternative options, but again, time is not on our side, and so far most of these other options have the same track record as the current conventional protocols that are available.

I have been trying to get Sophie to use a communication board to help me understand what she is trying to say. The social worker from hospice gave us some generic cards to use and then my sister Sarah and Andrea took pictures of things around the house. Sophie still continues to try to talk, and gets frustrated when I don't understand her. She has recently tried to use the pictures a little more.

Symptom wise Sophie is having a very difficult time chewing and swallowing. Her appetite has been better so it is hard to watch her struggle to eat. She's actually gone a few days here and there without vomiting but then the nauseousness comes back without warning. She has resorted to the use of pull-ups (although we still call them "sleeping underwear.") Yesterday I asked her if she can tell when she goes to the bathroom, and she said "Yes." I then asked her if it is too hard for her to sit on the potty and go and again she said , "Yes." Her balance and core strength have been affected and she dreads having to "stand" while getting her pants pulled up.

The hospice nurse came on Thursday and said that Sophie's lungs are still strong and her vitals are great. A positive thing to hear; we just need the rest of her to cooperate!

On Monday she finished her 18th treatment without the steroid . We are waiting for blood work to see if we can continue with 18 more treatments. We haven't really seen the kind of improvement that we have hoped for, but want to continue in hoping that maybe we will break through with these next 18.

I am thankful to God that Sophie has not been feeling any physical pain. I repeatedly ask her everyday if anything hurts, and she shakes her head "No." I'm sure it's hard for her emotionally though because her mind is perfect and trapped in a body that doesn't do what she wants it to do. From a mother's perspective, it is literally like watching your daughter be tortured; the only comfort that gets me through is that it doesn't appear that she sees it that way. It's hard to know what she really understands. I like to think that she is being comforted by Jesus each step of the way.

The last few days the weather has been beautiful and Sophie has agreed to go on walks, bike rides, and mini outings with Marc and this has been a blessing. It gives me a little break and I know the sunshine is good for her. I have a harder time convincing her to go outside...maybe because I haven't wanted to make her do anything she doesn't want to do. Although we actually did take a short trip to Bath and Body Works tonight to buy some antibacterial soap! How easy I forget.

Sophie has been so loving lately; she wants to hold my hand and be near me as much as she can. I tell her I love her and she squeezes my finger to let me know she loves me too. And even though her ability to smile is gone, every now and then I will see a twinkle in her eye and I'll know she is smiling.

Please, please continue to pray for her and for our family. We need God to bless us with a miracle, and we need it more now than ever. Thank you all for your continued love and support. With God, all things are possible.

Home from Tulsa

2007-08-18T14:15:00.000-05:00

Where and how to begin, I really don't know, but now that it's been 2 days since Emily asked me to do this for her, I can see just how difficult it is to find time to update, and my time is not nearly as consumed as hers is. Anyway, now that all the kids are in bed...at least for the time being, I am going to try and get a quick update posted, as I know many of you want to know how Sophie is doing.

As I write this, we (Marc, Emily, Sophie, Sarah, my parents, Zach and I) are all home at Emily and Marc's in Avon Lake. Sophie did complete 10 treatments in Tulsa, but then had a bad couple of days, taking a turn for the worse. It started with what Emily and Marc thought were some respiratory problems on Sunday, August 5th, as Sophie stopped breathing for about 30 secs after having a small meltdown. This was after some of her symptoms had started to worsen slightly (the drooling, the weakness, her speech) so Marc and Emily decided it would be best to be home. But then she bounced back a bit later that day, and Marc and Emily decided that Emily and Sophie would stay through the week for some more treatments. By this time my mom was out in Tulsa with Emily so Marc could go home to work. He took baby Sarah back to MI with him on Monday so she could stay with my dad instead of in Tulsa. Sophie did see a doctor in Tulsa that Monday, after the breathing episode the day prior, who told Emily that Sophie's lungs sounded clear. There was some possible issues with her port too, so after a day running around from hospital to hospital, an x-ray confirmed that everything was okay. After another day of treatments in Tulsa, Sophie started vomiting uncontrollably in the middle of the night, not even being able to keep water down. Again, another scary night and day for Emily and my mom, so they did one last treatment in Tulsa and headed home. That was on August 7th.

The first few days at home were rough for Sophie...still lots of vomiting, lots of sleeping, and worsening of the drooling, her speech, and her weakness, to the point where she is not walking at all. She still wasn't able to keep much of anything down and Emily was nervous about her hydration. The hospice nurses had come too, and said that as long as she is still urinating, she would be okay and that the decreased food intake wasn't really an issue just yet. They brought the oxygen and suction to the house, just in case. They also listened to her lungs and heart and said everything sounded good. Sophie has continued to do her treatments at home as her port is still accessed. She is over the half-way point with the treatments, during which time Emily has also continued to decrease the steroid. They were told in Tulsa that the steroid prevents the body from responding (to anything) like it normally would, so there was a chance that it would be working against the treatment. So, now she is on 0.5 mg, which is down from the 1.75 mg that she was on when they first went to Tulsa.

So, from day to day since then it has been up and down. Sophie spends much of the day in bed, restlessly sleeping. She continues to vomit daily, sometimes several times a day and night. Her speech is very difficult to understand, she is not walking or standing at all and is quite unsteady even when sitting. Her left hand, which has been the good hand, is also a bit shaky. She is showing some difficulty chewing and swallowing and at times her throat sounds rattly. It's so hard to say what is going on in her body, but she has shown some of the symptoms that many of the other cancer patients have experienced as their tumors lysed and were being killed off by this alternative treatment. Due to that, she has taken a day off here and there to allow her body to detox. Having been here for about a week now to help out, I can certainly say that some days are better than others. Some days when she does the treatment, she is vomiting non-stop and in bed all day, and some days are not so bad, with no vomiting at all. Mostly she just wants to stay in bed, but has had a few good days playing with my parents, Marc's parents, Emily's friends, Jen and Andrea, and even baby Sarah. Aside from her speech and sleeping at night getting progressively worse, her symptoms have been about the same for the last week or so. She is not eating nearly the amount of food she had been before, but has been able to keep small amounts of food down here and there.

At this point, the plan is to finish out the 36 treatments here at home and then go from there. Just today the hospice nurse came for a check-up and said Sophie's lungs still sound great, as does her heart, and her temp was just fine. We continue to hope and pray that this will be the answer to all of our and your prayers for Sophie. Please continue to pray for her, as well as Emily and Marc. Today was a bit of a tough day for Emily, as Sophie wanted only her. Up until today, Emily and Marc have been able to trade nights sleeping with Sophie and even myself, my mom, and my dad were able to do things for Sophie during the day, like potty breaks, and lying down for naps, but today she wanted nothing to do with anybody. Nights are really rough and are probably the hardest for Emily and Marc as she is very restless and just doesn't sleep. After a full day of tending to Sophie, a night without any quality sleep wears greatly. I can't even begin to imagine what is going through Sophie's head right now and I can't even imagine being in my sister's shoes. Days like today really wear on Emily, and her patience, courage, and strength are tested to the max. As always Emily and Marc are doing an amazing job with the hand they have been given, but they could never do it alone, so please keep sending your positive thoughts our way and keep the prayers coming.

Sarah

P.S. Just another note to add, now that I am getting back to this post and yet another day has gone by. Today Sophie had a better day and left the house twice and sat outside on the back porch for a bit. She had a "morning with Daddy" as she and Marc went to First Watch for breakfast and to the book store for a couple of new books. She's usually not too excited about going out but agreed to the trip if Marc carried her everywhere instead of using the wheelchair. Then she, Emily, and my parents went to Malley's this evening to bring back surprise ice cream treats for everybody. That has been a routine occurrence over the last week or so and Sophie sure gets a kick out of passing out the surprise treats when they get home!! It's great to see her enjoy parts of the day, since so much of the last few weeks have really been tough on her. Although it's getting more and more difficult to understand what she's saying, she still doesn't miss a beat and surprises us with the cute things she says from time to time. Today I was rubbing her feet and legs (her favorite thing for me to do) while Emily took a shower, and Zach started fussing in the other room. I wasn't sure if Sophie heard him, but usually it means I have to go see if it's time for him to eat or what he needs. This time I kind of ignored it for a second so I didn't have to leave and stop rubbing Sophie's legs, and Sophie said to me, without even opening her eyes, "don't worry, he'll probably calm down soon." I just smiled and again said a small prayer that there will be many, many, many more "cute Sophie things" for me to hear!!

New Hope?

2007-07-30T14:09:00.001-05:00

Once again, this update is coming much later than we had hoped. My intention was to update when we returned from our Disney Cruise, but then we received the heartbreaking news abut Maria, and it was too hard to update. Then I thought I would have the strength to update on July 21 - our five month mark since diagnosis, but then we were consumed with researching a new protocol and time slipped away. Now here we are on July 30 and we're just sitting down to gather our thoughts and update our loving supporters on what has happened in the last few weeks.

Yes...it has been a while since we last updated. Yes...we have been busy, but that is no excuse. One reason we have not been updating as frequently is because it’s harder and harder to stay positive. We approached this challenge with hope and optimism. However, watching Sophie’s condition gradually deteriorate has a way of stealing the little bit of hope that helps us get through each day.

Sophie now requires a wheelchair to get around. With handholding and a whole lot of prompting, she can still walk from the couch to the bathroom, but not much further. The weakness on her right side is more significant. She is unable to use her right hand and has very little use of her right leg. Her headaches are more frequent and she continues to vomit every other day or so. Her left eye is now crossed, she’s been drooling, and her weight is up to 54 lbs. As if this was not enough, we noticed that her speech had become more slurred and she was having more difficulty chewing and swallowing during the last week or so. Her appetite remains more-than-good, so we have been cutting her food into smaller pieces and encouraging her to take small bites and to slow down.

We have to assume that the tumor is progressing. Our last MRI did show new tumor enhancement, but because we were only 10 weeks post radiation, the oncologist stopped short of saying that the tumor is progressing. He did say that there was still a chance that the symptoms were due to radiation swelling and that we could still see an improvement. That was 4 weeks ago.

Given Sophie’s situation and the unacceptable prognosis given by conventional medicine, we have decided to pursue an alternative treatment. We are now in Tulsa, OK where Sophie will receive 36 consecutive intravenous treatments. We have been staying at a not-so-nice Day’s Inn, but will move into an apartment today.

The decision to pick up and leave was made quickly. My aunt Diane had done a lot of research about alternative cancer treatments and attended a conference in Florida 2 weeks ago. She found the only clinic in the U.S. that would administer this alternative treatment on Monday and after a 12 hour day of travel, we were in Tulsa by Thursday. Sophie has completed 4 treatments with her first treatment given Friday morning. She is tolerating the treatments well. The side effects are minimal, and more importantly, non-toxic. The lady that runs the clinic has done so legally for the last three years and claims to have successfully treated hundreds of cancer patients. She has treated 8 patients with glioblastoma eradicating the tumors in all but 1 patient. While a glioblastoma is different than a pontine glioma, they are both gliomas.

I was more than a little skeptical when I walked into the clinic Friday morning. It was nothing like St. Jude. But as I listened to the clinic’s director and talked with some of the other patients, I realized that maybe there is still hope. Maybe when we go back to St. Jude on September 4th for Sophie’s 4th MRI the tumor will be gone. Maybe we’ll wake up from a 6 month nap and this nightmare will be over. Or, maybe this is a fleeting hope and soon we’ll all come back to reality. Either way it’s hope. And hope is what helps us get through each difficult day.

We have managed to have some fun as a family since our last post. We went on a Disney Cruise a couple of weeks ago thanks to the Make-A-Wish organization. What an outstanding organization. Sophie had a great time. She loved getting her pictures taken with the characters, especially Minnie Mouse. She insisted on giving Minnie and the other characters gifts every time she got her picture taken with them. So each day we would visit the Disney Store on the boat so Sophie could by the gifts. By the end of the cruise, the characters were so touched by Sophie’s generosity, they wrote her personalized thank-you notes. It was a great trip and for a few days we escaped the reality of our situation. Sophie has been talking a lot about her next Disney Cruise, and she is already looking forward to Halloween and Christmas. We are anxious to make these days a reality for her.

I want to say thanks to my dad and brother for organizing the golf tournament in Michigan. I think it was much bigger than either expected, but they did a terrific job pulling it off. I also heard that the bowling event in North Olmsted was a huge success. Thanks to Niki Haag for all your hard work and generosity. The support we have received and continue to receive from friends, family, the community, and even complete strangers has been incredible. Again we say thanks.

As most of you know, little Maria McNamara lost her battle with this horrible disease on July 14, 2007. On July 18 we attended the funeral services, and reflected on the fact that exactly 10 years ago we were preparing for our wedding rehearsal. Who could have predicted our situation and the people we would meet because of it; this tumor is vicious, and has a way of taking the wind right out of your sails. Maria was a brave and beautiful little girl whose legacy will continue to grow through the Prayers From Maria foundation. The foundation was created to help families find cures. Maria and her family helped us more than they will ever know, certainly more than can be articulated in a blog. You can visit Maria’s foundation at www.prayersfrommaria.org

Your support and prayers mean a lot and help us through each day. Pray that we made the right decision in coming to Tulsa and that Sophie responds well to the treatment. Keep the faith, and help us continue to pray for Sophie's miracle.

July 2 MRI Results

2007-07-06T21:10:00.000-05:00

We arrived back from our family vacation in Florida followed by a quick one day stop in Memphis for a routine MRI. I wish I could say that the results were good, but that would mean the tumor is gone, and devastatingly, it is still there. The doctor told us that the 3 areas of necrosis that were seen in her May MRI are still present and "angry". He was surprised that they haven't "settled down" yet. In addition, one more area of "enhancement" appears within the tumor. (On an MRI, areas of enhancement are white due to the contrast dye that is used.) We were informed that this can mean one of two things, 1- the tumor is showing new growth, or 2- a new area of necrosis is developing. Of course we hope for #2, but even if that is the case, we need the necrosis to go away so that her symptoms will improve. As far as the size of the tumor, it appears a little larger, but again may be due to the bulging areas of necrosis within the tumor.

She had a few vomiting episodes before our trip to Florida and while we we there, she was throwing up every other day. Some days she says that her head hurts too, but other times she just vomits. She continues to struggle walking; due to the tumor, her weight gain, and her balance. Her right arm and hand are bent and tight to her chest. Her best times are in the morning, which are sometimes as early as 4:00 am, but then she tires out by mid morning. Her energy has been low, and most of the time in Florida, she wanted to do "fun things" but once we did, she was tired and wanted to rest. We do continue to swim, which she enjoys. We just can't believe the difference in her in the pool this year, as compared to years past.

The MRI also showed a new area of swelling, which is responsible for the pressure related symptoms of headaches and vomiting. We were advised to bump her decadron (steroid) back up to 1.5mg a day. This was particularly disheartening, because our goal has always been to get her off the steroid so that she may be a little more like her old self. We were told that her symptoms should improve with the increase in steroid...she has had less headaches, her energy has been better, and so has her appetite. When she has a headache, she asks for an "applesauce bite" to make her better. We were also told that if the tumor is growing, her symptoms will appear and worsen pretty quickly.

Her brace and new thumb split are in, unfortunately Sophie is not the least fond of them. We are supposed to be working up to wearing both during all waking hours, but because of the struggle, we have been doing an hour here and an hour there. It is amazing how much better her limp is when she wears the brace, but because it feels funny to her, she doesn't like it.

Sophie celebrated her 4th birthday first in Florida with a "combo" themed party thrown by Grandma, Grandpa, Aunt Sarah, Uncle Matt and Uncle Charly. They went all out and decorated the condo to the hilt! We had all the necessary supplies, complete with pinata, birthday hats, and blowers. We all had noodles with sauce and grapes and carrots for dinner because that is what Sophie wanted, and then since Sophie wanted a "Pooh" cake, we had that for dessert. Maybe Aunt Sarah can post a picture!

The birthday finale was on Wednesday the 4th with a party attended by many of the people who are special to Sophie. She had fun, and says she can't wait until she turns five! We ended up doing another Dora themed party, and we had the decorations to prove it. Very gaudy...just as any 4 year old (or kid birthday) party should be! I would include some pictures, but I haven't downloaded any because I haven't had my USB cord since our days in Memphis. I promise to get that all straightened out soon!

A super HUGE thank you to my good friend Andrea Segedi who pulled off the Carrabbas fundraiser, which I am told was a great success met with wonderful people and great food. I could begin to include all others who I know helped, but I would hate to leave someone out. Again, we want to say how humbled and grateful we are for the constant love, prayers and support from so many of you.

We are headed to Florida once again this Sunday for Sophie's Make-a Wish trip. The 3 of us are going on a 4 day, 3 night Disney cruise to the Bahamas and Disney's own island. We are all excited; even Sophie and we hope that our travels now will be easier since we have a wheelchair for transport. I never thought I would be happy to have my child in a wheelchair, but it is getting increasingly difficult to lift and carry Sophie. Her weight gain to date is 15 pounds since diagnosis just over four months ago.

There are so many more small details I could include, but finding the time to update has been increasingly difficult. Even though Sophie's symptoms are evident, when I lay down with her at night and we talk about the day, it is easy for me to forget our situation, if only for a minute. Her wit and charm make me smile in the darkness when my eyes cannot see the effects of the tumor. I am so grateful for our time together and enjoy laying awake with her even though I know her usual midnight, 2am and 4 am wakings will be here as soon as I close my eyes! I hope you understand our updating delays, but because we know there are many of you that care, we will try to be more diligent.

Sophie rarely complains about her situation, and doesn't ask us why this is happening to her. I guess that because our memories of being 3 aren't that clear, she doesn't really remember what she used to be like. I like to think of her as a brave little soul. Many of you have read the following passage before, but I came across it again the other night, and thought it was worth sharing.

The Brave Little Soul
By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

One last thing...about a month ago, we received Sophie's "Song of Love" and I have been meaning to put the directions on here so you can check it out if you are interested. Go to www.songsoflove.org and click on the Family and Friends download link. Type in the last name Quayle and then use 11681 for the record number. You must make a minimum donation of 99 cents to hear the song. It certainly makes us smile when we listen to the words and relive memories of our old Sophie. Hopefully you will find the cause worthy and make the donation to hear it.

We ask for your continued prayers for Sophie's miracle and for all the other children and families living this nightmare. We thank you for your love and support, and promise to update once we return from our trip. God bless.

Really overdue!

2007-06-09T09:30:00.000-05:00

We're back in Avon Lake after visiting Aunt Sarah and Uncle Matt in Florida. It was quite an ordeal; from our Sunday night flight out being cancelled (after my Dad and I were in the airport with Sarah and Sophie for 4 hours and then we were re booked on the 6:30 am flight Monday morning) to Sarah sneezing on the plane and consequently getting all of us sick while we were there, to Sarah catching a staph infection on her skin (most likely from the water in Florida), to Marc deciding to head back to Avon Lake with Sarah on Sunday instead of Tuesday with us so that he could get her to the doctor!!!! Never-the-less we still had fun, and Sophie got to spend some time at the beach and enjoying the Florida sun because the weather was perfect!!!!

We are hoping our trip back to Aunt Sarah's at the end of June (after her baby is born) will be a little less eventful.

While in Florida we began the decrease in Sophie's steroid dose. By the time we came back, she was down to 2 mg a day, but her appetite was still insatiable. I took her for her bi weekly appointment with the oncologist and neurologist here at RBC on Wednesday and both thought that from a neurological standpoint she looked better. Her weight was 48 pounds, which is obviously very concerning. Her blood pressure was high, (as it has been during the use of the decadron) and at times she seems to be breathing heavy. The doctor told me that this is due to the increased weight, and compared it to being at the end of pregnancy after gaining the average 30 something pounds, because percentage wise, Sophie's weight has increased by 30% which is comparable to an average pregnancy weight gain. I know how I felt at the end of my pregnancies, so now I am able to better understand why Sophie doesn't want to walk, why she is content just sitting and doing activities at the table, or watching TV. It breaks my heart because I know she needs the exercise but I understand how difficult it is for her to stand up, bend over, etc. because of her muscle weakness due to the tumor, but now also because of the tremendous amount of weight she has gained.

On Wednesday were given the okay to reduce the steroid further to 1.5 a day for a week (if she tolerates it) and then to 1. She hasn't had any headaches or vomiting, but she has been more tired. We are hoping this is a side effect from "coming down" off the steroid, and not an indication that she needs to go back up to 2. We still haven't seen a real decrease in her appetite, but we are hoping to, so that she may be able to enjoy the nice warm weather we have been having.

She finished up her 3 week cycle of her chemo, and she has a week off before she starts another 3 week cycle. We will wait to see the results of her July 2 MRI to decide if we can and/or will continue with the Zarnestra trial.

We have established a "sleeping schedule" so that I can count on a few good nights of sleep (if Sarah doesn't wake up) and also so that Marc can share in the bonding experience that I have when I lay down with Sophie at night. Grandpa even has a day - Wednesday, and even though if Sophie had the choice, she would choose to sleep with me, she has been receptive to the schedule. It's strange, now when it's my turn for a break, I have a hard time falling asleep without her!

Sophie had her first PT appointment here at the house. It was a good workout for her, and she fought back tears at some points. It's so hard for me to force her to keep going when I see the pain and anxiety in her eyes, but she did it, and hopefully she'll do better next week now that it is not so new. The therapist is bringing a colleague with her who will make a cast of Sophie's leg (she doesn't know this yet, and I am nervous to tell her) so that she can have a brace make to help her with her stiff-legged walk. The PT mentioned this to me during her initial consult, and so I asked Sophie's neurologist her opinion on Wednesday and she thought it was a good idea, so she wrote the prescription. We're hoping that this will allow Sophie's leg to become used to walking in the correct posisiton as she continues with the therapy in order to strengthen the muscles. I know she is NOT going to want to wear it at all. We battled with the glove that she was to wear at night, and I know this will be a battle as well. Insurance will pay for 6 in home PT visits, and then we can request more if we can prove that Sophie needs it and/or that she is making progress.

Now it's almost been a week since I started this post, and I'm finally finding time to finish it now that I am back in Florida with Sarah and Matt because little Zachary decided to come 3 weeks early! Everyone is sleeping, so I have some computer time.

Sophie continues to be the same symptom wise. She hasn't had headaches or vomiting, but remains the same in terms of her limp, right side weakness, and difficulty smiling on command. She can smile when she is laughing, or happy; the neurologist informed me that we use different muscles to smile on command than we do when we are laughing, so that explains that. Her appetite is slowing a little, and I mean a little. She is still quite lazy, for lack of a better word, and getting her out of the house to do anything can be hard - unless of course it involves going to a restaurant! Recently I told her that she has to take 2 walks around the cul-de-sac per day. She has been complying, but not without complaint.

We are still giving her 1.5 mg of decadron daily. We planned to reduce it to 1/day on Thursday, but thought it might be best to wait until I am back home on Monday.

A huge thank you to the IHM community in Cincinnati for the walk-a-thon fundraiser last Saturday. We continue to be humbled, and overwhelmed by the love and support from people both near and far. My parents drove down Saturday morning and had only wonderful things to say about the people and how organized everything was. I know Lisa Nicholson was the brain behind it all, and if I tried to thank others, I would inevitably forget someone, so a general thank you to everyone in Cincinnati, especially the IHM parishioners and my wonderful CRHP sisters who I miss so much. I love you guys.

We have been plugging along. Some days are better than others, but there are times when I find myself really missing the old Sophie. The innocent little girl with the smile, who wanted to spend time outside and go places with me. It's times when we do things that we used to do, when I realize how different she really is, and mostly I feel angry that she has to go through all this. I wish all she had to worry about was what we were going to play next, but instead she worries about how many "appointments" she has, who is coming to the house, how many bites of applesauce she has to take today, and how many more days she has until she has to get her blood drawn again.

Her fourth birthday is coming up on July 4th. We were talking about what kind of party she would like to have. At first she was set on Winnie the Pooh, then it was Backyardiagns, and now we are back to Dora (which she had last year). When I told her that she couldn't have the same theme two years in a row, she told me, "It's okay Mommy, I'll have Dora this year, Winnie the Pooh next year, and then Backyardigans the next time." My prayer is that she'll be around for many more birthdays, and that her only worry is what theme we should have for the party. I know the statistics aren't in my favor, so we keep the faith and keep praying for her miracle, and we ask that you do the same.

Thank you for your thoughts and prayers.

Fundraiser Updates

2007-05-29T17:59:00.000-05:00

Hi to everyone!

Well, I just dropped Emily and Sophie off at the airport to head back home to Avon Lake, and it just seems way too quiet around here now! I sure will miss them and am glad they were able to come - we had a great visit (minus the colds we managed to pass around to each other)!!

I know it's been awhile since any new posts and I am sure it may take Emily a few days to get back into the swing of things at home, but I did just want to get some information out on the upcoming fundraisers.

First, tickets are still available for the Carrabba's luncheon on June 16th. If you are planning on attending, please contact either Andrea Segedi, Patti Bozoian, or Joe Szejda for tickets (their phone numbers are on the flyer in the "Events" section on the right hand side of the page). Remember that seating will be done in 30-minute increments, so if you were planning on going with a group of people, please don't wait until the last minute to get your tickets.

Also, Sara Czarnecki, a member of the Paula Czarniecki Memorial Fund, contacted me about a fundraiser they have put together for Smiles for Sophie as well. It is a Spaghetti Dinner on June 8th, from 5-9pm at the Peace Evangelical Lutheran Church in Southgate, MI. Below is the flyer for this event.

In addition, Bob and Brett Quayle (Marc's dad and brother) have organized a Golf Scramble in Grand Blanc, MI on July 16th. This event is slighly different in that proceeds will go directly to St Jude's in order to further research in the area of pediatric brainstem tumors. The flyer for this event will be posted soon in the "Events" section.

And, the Walk-a-thon in Cincinnati, OH is coming up this weekend (see the flyer in the "Events" section). Lisa Nicholson and her crew have been working very hard to put this event together and it sounds like it will be a great one. There will be a band, many items for raffle, children's games, and of course lots of great food to go along with the walk.

Finally, we will soon be posting a link to an online store for Smiles for Sophie T-shirts and bracelets. Some of you may have already seen the T-shirts and bracelets at the Euchre Tournament Fundrasier in Trenton, MI, and with all the interest, we decided to make them available for purchase on the website. Again, this link should be coming very soon so stay tuned for more information.

Thanks to everyone for their continued efforts and extreme generosity with all the fundraising events. The outpouring of support is still so overwhelming and we truly appreciate it.

Please continue to pray for Sophie's miracle!!

Love,

Sarah

Long overdue...

2007-05-19T19:07:00.000-05:00

I realize it's been a while since I last updated. Being home has kept us all busy. Taking care of the girls is a full time job, and when you add appointments and laundry, thank you notes, and trying to keep things under control, few spare moments remain in the day. Each night when I lay down with Sophie, I plan on getting back up as soon as she falls asleep so I can update, but usually, I don't wake up until Sophie is telling me she has to go potty, and by then it's at least 11:00, and I'm content just sleeping!

Aunt Leslie and Uncle Jacob were so generous in paying to have our house deep cleaned. It needed it, and we are so grateful. They also arranged to pay to have our house cleaned 2 more times over the next month or so. Thank you guys!

About two weeks ago, Sophie was having some bad headaches and neck aches and was throwing up again in the mornings. Walking was difficult and she seemed a little off balance. She was not much in the mood for eating, so we were concerned. We contacted Dr. Gajjar in Memphis and he recommended bumping her steroid dose up from 1 mg a day to 2mg 3 TIMES a day in order to get the swelling under control. (He still feels fairly sure that the swelling is from the radiation.) We thought 6mg a day was too drastic of an increase so we opted for 4 mg a day in an effort to control the pain and throwing up with as little side effects as possible.

Sophie's symptoms responded well to the increase, but unfortunately so did her appetite. She is back to wanting to eat non stop and when I took her to the local oncologist on Wednesday, she weighed 45 pounds. When she was diagnosed, she weighed 36. Her doctors said she looked better than she did two weeks ago, and that she was showing improved muscle strength.

We gave her the 4mg a day for 8 days, and as of Thursday, decreased the dose to 3mg a day. Her personality and mood do not seem to be affected by the increase in steroids. We have seen many smiles and heard a lot of laughter lately. (And her smile is improving too.) She did seem more tired today than she has in the past week; we are keeping a close watch on her. Hopefully she is just tired from the long walk and picnic Aunt Leslie took her on Friday!

We started back up on the chemo about 12 days ago. We didn't realize that this course would be an increase from 175 mg daily to 300 mg daily. She is tolerating it well; the only side effect she complains about it being "itchy". We are continuing to give her as much of the herbal and alternative remedies that we can get her to take.

We finally had the visit from the in-home PT who did an evaluation. I was happy that Sophie was a lot more successful with many of the "tests" than she was in Memphis. We're hoping that we can continue to strengthen her muscles through the PT and OT so as the radiation continues to work, her right side weakness will improve.

She also had her bi weekly blood draw and port flush here at home by the home health care nurse. I thought that maybe being at home would make the experience better for her, but I was wrong and quickly taken back to the Monday mornings of "port access" while at St. Jude. She was a tiny bit comforted knowing that we won't have to do this again for 2 more weeks. She still HATES it.

Tomorrow we are going to Florida to visit with Aunt Sarah and Uncle Matt. Grandpa is making the flight down with me and the girls, and Marc will be joining us on Thursday for the holiday week end. We are looking forward to being in the sunshine, and hope that the warm weather will distract Sophie from the feeling of constantly being hungry.

Thursday Megan McNamara and I were treated to a 60 minute facial, compliments of "A Time to Spa" in Olmsted Falls. We are so grateful for the wonderful gift of relaxation. We both felt guilty escaping the reality of life, if just for an hour, but are so glad we did. The spa was wonderful, and so generous. If you live in the area, and are looking for some pampering, check them out, at atimetospa.com This morning, we were able to take Maria and Sophie for complimentary mini manicures, and then out to breakfast. We enjoyed our girls morning out, and again want to thank Lisa and her staff, for their kindness.

We continue to ask for your prayers for Sophie's miracle and also for prayers for all the other kids and families fighting this battle. We have good days and bad days, but the battle definitely doesn't get easier. It's the fear of the unknown that can quickly make you shake your head after smiling in admiration when Sophie says something so cute and "Sophie-like". Just wondering how much longer I will be able to hear her say those things is enough to make my heart sink, when all I really wish I could do is enjoy her. We take each day moment by moment, because we know that when we allow ourselves to worry about the future that the feeling of helplessness sets in. We continue to ask for God's grace to help us through, as we place our trust in Him.

I hear Sophie calling me, so I'll close for now. I will try to post more often, as I know many of you anxiously await for updates. We thank you for your prayers and kind words.

Attention Runners and Walkers in the Downriver Area!!!

2007-05-10T17:42:00.000-05:00

June 15th, 2007 is the annual Zanglin Downriver Run through Elizabeth Park in Trenton, MI. Every year, the proceeds from the run are donated to charitable organizations and this year, Smiles for Sophie will benefit from the generosity of Jim Zanglin and all the participants of this year’s event.

So, if you’re interested in running or walking this year to help raise funds for charity, please check out the Zanglin Downriver Run website at http://www.zanglinrun.com/. There is both a 1 mile fun run that starts at 7:30 pm and an 8K road race that starts at 8:00 pm, followed by a street party. The event is open to runners and walkers of all ages. The website has all the pertinent information as well as links to registration information.

Thanks to Libby Shumate and Sandi Polgar, another of my mom’s Lenox neighbors, for their work in this fundraising event. Also, many thanks to Jim Zanglin and the Zanglin Downriver Run for choosing to help support Sophie and her family with this year’s event.

Sarah

First MRI results...

2007-05-04T07:01:00.000-05:00

Thank you to all of you who continue to pray for us.

We've had a few very busy days, and after several attempts to post, I am finally getting around to finishing. Before we went to St. Jude on Wednesday, we had a visit from a few members of the hospice team that handles this region. Obvioulsy hospice seems very premature, but these are the people who will be coming to the house every 2 weeks for blood draws and port flushes, and we were surprised to find out about many more services that they offer for our entire family for every stage of this "disease." We then went to an appointment with the oncologist here in town. We were supposed to have seen him last week, but couldn't get in until this past Wednesday. The point of our visit was to make contact with him so that we would have a local person to speak with in the event that Sophie needed care that couldn't wait for a trip to Memphis. Dr. Jacobson was Sophie's doctor here at the hospital in Cleveland when she was first diagnosed, so he had seen and treated her before. We explained to him what treatment we had completed in the past months and the symptoms we have been seeing recently, as well as the concerns we had about how she was (or was not) responding to radiation. He suggested that we increase the steroid dose to see if the symptoms would improve, and to call him for a follow up in 2 weeks after we returned from St. Jude. He was very kind and reiterated the fact that early post radiation MRIs are hard to interpret.

We left the appointment and went straight to the airport for our flight . When we met with Dr. Gajjar before the MRI and explained Sophie's latest symptoms, including neck pain, and that she threw up pretty strongly (if that makes sense) the morning we left (so much so that I didn't even want to risk her getting on the plane), and that she seems to be showing signs of hearing loss because she continually says "What?" to most things we say to her. He was quite confident that the symptoms were due to swelling caused by "angry" areas of necrosis within the tumor. He told us that in about 35-40% of children with DIPG, they don't show the maximum amount of improvement until 6-8 weeks post radiation. We had never heard that statistic before, and because he seemed so sure, we were a little less anxious during the MRI. He also recommended that we increase Sophie decadron to 1 mg daily and see if her symptoms improve.

We were able to get Sophie in for a quick hearing test before the MRI, and the results were "inconclusive" because of how Sophie's responses were "inconsistent." The test results seemed to show that Sophie has borderline hearing loss in her right ear, and mild hearing loss in her left. Also in her left ear, her tube is blocked, and she has a big piece of wax deep in her ear canal. GREAT.

The results of the MRI showed a .2 cm increase in the size of the tumor. Dr. Gajjar reemphasized the fact that this is most likely due to swelling, and not tumor growth. He said that the doctors seldom categorize a tumor as "progressive" until 4-6 months post radiation. A little reassuring I guess. He also said that the areas of necrosis looked bigger, and angrier. Good, and bad. Good because it means the tumor is dying; either because it is so embedded that it isn't receiving enough blood, or because Sophie is getting her miracle. The bad thing is, is that bleeding from necrosis can be dangerous.

So now we are home and Sophie seems the same. Really tired and amazingly grumpy from just the small increase in steroid. We took her to see a naturopathic (not even sure how to spell it) doctor today and we were told that Sophie seems to be showing high levels of mold in her body. We were given an herb and some other suggestions to try in an effort to improve her overall health so that maybe she can fight this tumor.

I still have faith that Sophie will get her miracle. Yes, my faith waivers a little when I see Sophie walk with that stiff legged walk and right hand and arm curled in. It saddens me to hear her say, "Mommy, you better help me downstairs, or I'll fall for sure." and to watch her try to roll over in bed, and she can't because she can't move her arm and leg the way she wants. Mostly I am sad for her because she has been robbed of so many things. Although she hasn't really complained much during all of this (except when it came to her port) I was so sad when she was gagging and trying to throw up with no contents in her stomach on Wednesday morning, and she turned to me and said, "I don't like to feel this way," and "Why do I have to feel like this?" To me, that isn't fair, and just like most mothers would, I longed to be able to bear this burden for her.

Oh well, hand it over to God, I suppose, because there is nothing else I can do. Right now we are desperately awaiting improvement from the radiation now that we have renewed hope. We will continue with the herbs and enzymes, as well as the energy healing. We are set to start the 3rd course of the chemo trial after being off for 2 weeks, although we just don't know if that is the right thing to do. We have until the fed ex package is delivered tomorrow from St. Jude to decide.

Please continue to pray for Sophie's miracle, and that we will continue to see improvement. I long for her to be able to walk again, and to have her smile back. Sophie is sleeping now and I should be too. I'm going to cuddle up next to my little angel.

Again we thank you for your continued support and prayers, and a special thank you to my Dad who has been a tremendous help with Sophie and Sarah. I can't imagine how we would be coping without his help, and his willingness to do anything and everything. I am so lucky and so blessed, and I know that he wishes he could take this burden from me. I love you Dad, and Marc, Sophie and Sarah love you too.

A Way to Help

2007-05-01T20:55:00.000-05:00

Hi everyone,

We are grateful to all of you who have been so generous to us during this battle, and I just wanted to make you aware of a situation so that maybe you could help if you are called to do so.

I'm including a link to a website of a little girl who also has a DIPG. I actually had the chance to meet her and her mother the day before we left St. Jude. Her name is Dasia and despite the tumor and the prognosis she has been given, she is living without symptoms (and has been for over 2 years).

The reason I'm introducing you to her is because her family is going through some very difficult emotional and financial times...in addition to the daily struggles one is faced with when dealing with this medical battle. You can read her journal and find her address so that you can make a donation if you are willing and able.

http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=dasiaatkinson

Sophie had a better day. Her smile is not as big...but not because she isn't happy or having fun. We're still dealing with the same symptoms. We are placing our trust in God. My email from the "Purpose Driven Life" website was very profound and inspiring. It reminded me that I need to keep giving this situation over to God. You can read it below.

No matter how bad things get – God is still able to bring good out of it. Today, thank God that nothing – no disaster, no delay – is bigger that his ability to turn it into something good and godly.

· Thank God and let go – Thank God that he is sovereign over your past, your present, and your future.

Give God the circumstances, disasters, hindrances, hurts, and sins from your past.

Give God your current situation, your disasters, hindrances, hurts, and sins of today.

Praise God that he can work anything in your future for godly good, that you can walk in confidence that there is nothing anyone can do to you, or anything you can do that will be beyond the reach of God’s grace and redemption.

· Look for God’s hand – Walking by faith means you see God’s hand even in the most difficult of circumstances. You trust his ability and his willingness to transform the bad into godly good. God is not limited by people’s motives. In other words, it doesn't matter why someone hurt you, God still can transform a deliberate, mean-spirited situation into something for his good.

· What will you allow God to change? – There it is: some situation, or event, or person in your life that, as far as you can tell, was “meant for bad.” How do you think God meant it for good?

We continue to appreciate your thoughts and prayers. Please keep praying for Sophie's miracle, and really believe and place your trust in God, because miracles DO happen.

Still the Same

2007-04-30T19:51:00.000-05:00

Many people have been asking how Sophie is doing since my last post. We are answering with "About the same," because in some ways she seems better, but then new things are coming up.

Her personality is the same. Still generally happy, but tires easily. Grandpa says it is because they play so hard during the days. Friday, Saturday and Sunday night she complained that her neck hurt. That was concerning. She pointed to the area at the top of her spine; even more concerning. If we question her, she will say it doesn't hurt. I think she can sense our anxiety.

She also has been sleeping fitfully again. Last night she wanted to get up for the day at 2:00am because "it hurts to sleep." She didn't remember saying that this morning.

Her new favorite thing is for me to "stretch her." This is a good thing because she needs that range of motion in her right arm and leg. I am really having to pull to flex her right foot and straighten her right fingers and thumb.

On the up side, Papa came last night and this afternoon brought Sophie a few flowers to plant outside...that has been her latest obsession..."when can we plant flowers?" He also played outside with her for a long time. I think he was more tired than Sophie! She can be pretty demanding! Grandpa also arrived and took the girls to the park with Marc while I went to the dentist; again. Sophie has been playing pretty well with Sarah. It is so cute to see. She does get protective about her stuff...in true big sister manner, but the other day they sat and played with Sophie's kitchen stuff for a while with no adults "helping." Sophie did a lot of walking at the park, and bending down while planting, so at least she is still moving.

She is wearing the glove at night for as long as we can get her to keep it on; it doesn't fit her perfectly, so we will ask at St. Jude about getting a new one that stays in place.

I want to thank all of you who are making comments to the blog. I always forget to mention that we find tremendous support in knowing people are praying for Sophie everyday.

We, of course, continue to be anxious about Thursday. We are trying to be realistic about what the MRI might show. One, the symptoms could be a result of all the radiation and prayers causing swelling because the tumor is dying off so fast. Two, the tumor is getting bigger and the radiation didn't work. Or three, there is a secondary tumor somewhere else. We are hoping, praying, and begging that option number one is behind all this.

When Sophie was first diagnosed we asked ourselves "Why?" over and over, but then accepted the burden we were asked to carry. Now we find ourselves again asking "Why?" "Why isn't she back to normal?" This time, we are trying to remain hopeful that the "back to normal - at least for the summer" that we were promised will still happen. It is hard to look around and realize that for most DIPG kids, radiation does give them back some good time. The guilt of putting Sophie through all of the radiation drama and the trip to St. Jude for possibly nothing is really wearing on me.

Again, we ask for your prayers and thank you for your support.

Keep the Prayers Coming

2007-04-27T16:39:00.000-05:00

Just a quick request for more prayers. It's hard for us to tell if Sophie is doing worse like it seems, or if her body is adjusting to being home and going non stop.

Her limp and stiff leg are more pronounced, as is the weakness in her right arm and hand. She has gone back to mostly crawling up the steps, and she wasn't able to smile as big this afternoon. She is also having trouble with her balance.

We went from giving her the steroid every other day, to every 36 hours, now every day. We are hoping that she is just tired and these symptoms aren't indications of the tumor.

Please say an extra prayer for her today, and all this week until we head back to St. Jude when we will need even more prayers when she gets the MRI. We are anxious and nervous.