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.