One Month From Today

Sarah, Grandpa & Grandma after kindergarden graduation.

Wow it has been a while. Seems I can't start a blog anymore without that opener. So many times I intend to put my thoughts into words, and for some reason or another I get distracted! Wednesday my little Sarah "graduated" from Kindergarten. It was a short, casual, yet lovely event held in her classroom. As the parents watched a cute video of the class highlights from the year, and Moms and Dads got a little teary eyed, I reflected on the year with Sarah and how much she has changed and grown, but then my thoughts led to Sophie and the past four and half years we have been living without her, and how much we never got to experience...deep breaths followed as I wondered what I have missed...more than I can begin to imagine I am sure. 

Usually I try to prepare myself ahead of time when I know a "hard day" is coming. And most of the time I do okay. However, it is usually the days leading up to, or the days after that are so hard. You would think I would know that by now. Guess there isn't a way to be strong all the time. Of course Tuesday night before going to bed, we had to pick out the perfect dress to wear. Sarah tried on a few before easily deciding she wanted to wear one of Sophie's. (Since Sophie was so big from the steroids, she was wearing some things that were size 6x or 7 and now finally fit Sarah even five years later.) Sadly this will be the last of the clothes that we will have to pass on to Sarah as she will soon be a size that Sophie never got to be! The dress she chose was one that Sophie picked out for her fourth birthday. Sophie loved that white dress and wore it many times on the Disney Cruise. Weird, just a weird feeling I got seeing Sarah wear that dress and a feeling that can't be described unless you have been there. I have hanging in Sarah's closet, the purple outfit Sophie wore on her last day here on Earth. I don't know how I will feel if and when Sarah wants to wear that one....still almost 5 years after her death, these are the things I think about on a daily basis.

Even though we don't hear the "How are you doing?" question as often, as life seems to have moved on around us, we stop and pause frequently to realize we will never be the same. Our life goes on and it is good in many ways, but we realize that the life we really want, will not be given to us on this Earth.

In one month from today, we will be "celebrating" Sophie's birthday with "The Race", the "Birthday Bash and Dash". Of course I'd give anything to have Sophie here. Having the simple (although, not knowing what I know now, I would think it was the hard ) task of planning a child's ninth birthday is something I still long for. I wish for those days when I thought it was hard to have two kids and to keep up with all that raising them involves. Don't get me wrong, I know that taking care of, and worrying about kids is hard work, yet I also truly know the sense of the word "hard" as I help to plan the birthday for my first born who is no longer with us.

As we plan the race for the fifth time, I do feel very blessed. Things are coming along and we are excited to see the fruits of our labor. New this year is the option to "run in spirit". I know many of our supporters are not local, so this year we added the option for supporters to register and do their run on their own time, in their own place. If you register by June 17, we will send you a race t-shirt. Or if you live locally but can't be at the race on the 4th, you can still pick up your shirt at our packet pick up.

One thing we are in need of this year is a DJ. Our good friend Joe Gardner of Simply Sound and Lighting who has donated his services the past three years, is unable to be with us this year because of personal issues. We will miss Joe greatly and appreciate his past help. If you know of a DJ who would be willing to donate their time and talent, please email me at emily@smilesforsophieforeve.org

Of course our main goal again this year is fundraising. Raising money for our foundation is our main goal. It helps us do what we do. I want to say thanks to those of you who have already created your fundraising page and have been helping us try to get to our goal of $50,000! We appreciate your efforts so very much. If you plan on attending, or even if you don't, you can still create a page. If all of our readers raised just $20, it would make a huge difference. But if you would rather donate, you can do that too at http://www.active.com/donate/bashanddash2012/quaylefamily

As an incentive to our fundraisers that raise a minimum of $100 we will be giving each an exclusive dry fit shirt, as well as an entry into a drawing for one of two iPod shuffles. If you want to do something to help, here is your chance! Again, we are so grateful to those of who you help us in this way.

Additionally, if you are local, we are still looking for volunteers to help at The Race. This year our volunteer coordinator Tru Pace has created an online sign up, so you can pick the job that you like the best. Even if you have never volunteered before, we are happy to have you. Everyone is welcome and greatly appreciated. Here is the link to sign up.  http://www.signupgenius.com/go/30E054CABAA2A1-race

We are still looking for corporate sponsors, as well as donations of items to be used in our raffles and auction. If you, or anyone you know has something to offer, please share the website with them. You will find our sponsorship forms along the left hand side of the website after you click on the events tab on the main page. Any type of basket you can think of, sporting tickets, cedar point tickets, sports memorabilia, gift cards, services...we will take anything! We thank you for helping us with this.

We are excited to be offering a packet pick up at the All American BBQ in Avon Lake on Friday June 29. The event will be held at Veteran's Park from 4:00 to sunset. We will take late registrations there as well, but you save $5 and get a guaranteed t shirt if you register by June 17. So don't delay!

On the home front, things are good. It still amazes me how fast time goes by. This time last year I was about to give birth to little Marie. She turns 1 on June 13, and I can literally say, "Where has the time gone?" We love her and can't imagine life without her. She is growing so fast, just as I knew she would. And it is so fun to see her with Sarah. Marie adores her. I am sure you know I would have to say that I can't think of sisters without thinking of Sophie and all that Sarah missed out on before Marie's arrival. We still talk about Sophie all the time and have been showing little Marie pictures of her. I still find it hard to respond when people see me out with the girls and say, "Two girls eh?" "No," I think, "three girls, just one is in heaven..." but sometimes even I don't feel strong enough to explain.

I hope to see you on the 4th, and if I do, know that it will be one of those days that I have programmed myself to be "strong". I will tell you I am good and doing okay, and maybe I really will be, because if it's like every other year, I will have Sophie giving me the strength to honor her memory by "Racing towards freedom from pediatric brain cancer."

 Until next time, Emily

It's Been A Very Long While

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!!

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

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

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

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

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

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

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

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.