Sophie is Home!

Sophie is home! The doctor released her from the hospital Friday evening, and she said over and over,” It’s so great to be home.” And of course we are glad to have her home!

There is hope – definitely hope. In the last couple of days, I have seen many examples of God working in our life that affirms this hope and is helping us focus on what we CAN do.

It’s been a blur since I made the first update, so I will try to get you up to speed. My typing is not the best, and I can’t promise you I will proof this, so bear with me! After meeting with the oncologist at Rainbow Babies’ and learning our 3 options; 1- do nothing and let the disease run it’s course, 2 – receive radiation at Rainbow Babies, 3- participate in a clinical trial at a hospital in the PBTC or COG, we have made our decision to participate in a study. The specific study has not yet been determined, because there are a couple that Sophie might be eligible for, and we want to pool all our resources to make the best choice.

Ironically, and I would say coincidentally, but there is no way this is coincidence, we have met another family in Avon Lake who has a 7 year-old daughter, Maria, who was diagnosed with this same horrible cancer last April. You know how rare this particular cancer is, (this family has only met ONE other family with the exact diagnosis during all their treatment and research) so you’ll probably have as hard of as a time as we did wrapping your arms around this - the family (which we had not met or heard of until this) literally lives 200 yards from us – in the cul-de-sac behind our house! Many, many people are convinced that there is something in the environment that played a role…I’m not there yet. I believe this is a gift from God. Today, Maria is beating the odds…she was told in November that she may not see Christmas, and last week she was at school.

Ed and Megan came to our house last night, and shared many, many stories, research, experience and insights regarding their journey with this disease. What a blessing! They couldn’t say enough about their experience at St. Jude’s. We had heard after the diagnosis from many, many people what a wonderful place St. Jude’s is; but we also heard that it was nearly impossible to get into. (Ed was able to give us specific phone numbers of their doctor when Marc first talked to Ed on Wednesday, and Marc made the call to him, while I contacted the brain tumor coordinator.) Shortly after leaving a message, the doctor himself called us back, and told Marc “You are in, and I can get you here on Monday – Feb 25” Another gift from God! Still wanting to do research…just to cover the bases, we told him we would get back to him (not sure what we were thinking)! Anyway, Ed and Megan reaffirmed that St. Jude’s was the best place for us and Marc emailed the doctor last night to see if the offer was still good. (He just came down here to tell me he heard back, and we are going!)