Monday March 19, 2007

The irony of this picture. It was in September of 2006. Sophie was probably experiencing symptoms already, as she was taking a nap; something she hadn't done in quite a while. Marc put Sarah in bed with her...Sophie didn't wake up. Notice her shirt says, "Life is Good." Oh how it was...

Before I sat down to post, I was just finishing my attempt at giving Sophie her last doses of medicine. Four different things to be exact. We've been trying sorbet, because now she has decided she hates applesauce. Being the smart girl she is, she took one bite and said, "What is IN this?" We got most of it down, after a lot of convincing, but it left me wondering if she really got the entire dose, and also feeling guilty for forcing her to take something that has no guarantees. I heard God speaking to me when I opened my email and read the weekly bible wisdom that I subscribe to and it said,

"You stand tallest on your knees."
"Wisdom is to do now what you will be satisfied with later."

I sure hope we are satisfied with the results of forcing all this medicine down Sophie's throat.

Anyway, we now have 9 radiation treatments under our belt. Still looking for some major sign that the treatment is working. We've noticed that Sophie's right eye is looking a little lazy; more so when she is tired. This worries us because the right side of her body is where she is having the weakness. Still no change in her coordination, but one good thing is that she hasn't thrown up since our night visit to the hospital last Thursday (and that wasn't really due to pressure anyway). Her mood remains better. She is still very lethargic, although she didn't nap today. I'm sad that she no longer looks like Sophie. Her belly, cheeks and chin are big and swollen.

This morning's PT appointment and re access to her port were NOT fun, and I can't say the process is getting any easier. Well, maybe recovery is better...I have to be optimistic about something. We are back on the laxative after a few days off because her body seems to need a little boost.

Tomorrow we have a 7:45 radiation treatment. We'll be up extra early because Sophie needs a bath. I just didn't have it in me to force her into the tub tonight. I should have just gotten it over with because I know the morning won't be any easier. Tomorrow we will meet with the oncologist to see if we can drop her down one more milligram of steroid.

In my thank yous last post, I forgot to mention the students and staff of Bay Village High School who raised money for Sophie. Marc's Aunts, Donna Quayle and Margaux Hamilton, rallied their 2 Bay High seniors Christian and Dave (with the help of the principal Jim Cahoon) to raise money to make a contribution to Sophie's fund. We thank all of you for your efforts. You can't even begin to understand how grateful we are.

We realize there are many of you out there working to raise funds on our behalf, and we sincerely appreciate your generosity. We hope to be able to recognize each of you because you mean so much, but for those of you who we don't know, we are still just as grateful.

My sister Sarah contacted a homeopathic doctor from India that does some work in the U.S. We are hoping to meet and talk with him and start a course of treatment that will make Sophie's time with us as good as it can be. But this treatment is expensive and not covered by insurance. We will continue on with our treatment here at St. Jude and are confidant this is the best place for us now, but we want to keep all of our options open. Marc told me today he wants to become the expert in homeopathy, so that we really can make the most of our time with Sophie.

I've been a little sad lately. I watch little Sarah and how she is moving around, and the tons of energy that she has. It make me angry that Sophie should finally be enjoying her company and moving around with her, but it is Sarah who actually is moving and doing more than Sophie. It has been hard for me to appreciate the radiation, knowing that if we do follow in the foot steps of those with Sophie's diagnosis, our time after radiation is short. More than anything I wish I could stop time and stay in the here and now. No better, no worse, just with Sophie.

We thank you for your kind thoughts, cards, gifts and prayers, and ask for your continued prayers. He knows how to best answer these prayers. I always think of a sign my parents have at the cottage. It says, "God answers all prayers. Sometimes He says, 'Yes' other times He says, 'No' and sometimes He says, 'You've got to be kidding.'" May He say "Yes" to our prayer request for a miracle.