“Do You Know?”
Hello from St. Jude’s,
Throughout St. Jude’s there are pages with the words “Do you know?” written on them. The purpose of these pages is to explain how things work at St. Jude’s. When I have sat in the Medicine Room for two hours listening to a child hit the same button on his noisy toy, I do not appreciate reading a “Do you know?” that states no noisy toys are allowed in the Medicine Room. Don’t tell me the “rules” if you are not going to enforce them. During many of my frustrating days I have thought about writing a “Do you know St. Jude’s that this is how the parents feel about all of your Do you knows?” It would probably be too sarcastic and therefore funny to be taken seriously. So instead I write to you all on Catie’s website about the frustrations that we face each day.
In last night’s e-mail update I stated that we went to the Pavillon with Lynn to show her how amazing this place is. I wanted Lynn to be able to read first hand the testimonials written about Danny Thomas and ALSAC (St. Jude’s fund raising arm). That was a truncated thought. The rest of last night’s e-mail was about Catie and her schedule and throughout it my own “schedule frustrations” surfaced. A schedule can be frustrating, even when you are not here. Cancer can be more frustrating and I don’t have cancer. Catie does and I need to keep reminding myself of that. While everything here at St. Jude’s is not perfect and those imperfections can be frustrating, there are perfect things here. Hope is here.
Hope is the reason that St. Jude’s was founded; Danny Thomas prayed to St. Jude and made a promise. People make promises all the time and they don’t keep them. As the election draws near and the economy sits on the edge of disaster the promises two men are making are on the minds of many of us. Danny Thomas remembered that he made a promise and then he kept it. He kept it in a big way. Danny Thomas’ promise is St. Jude’s Children’s Research Hospital and here at this place amazing things are happening everyday.
St. Jude’s offers Catie and so many other children so much hope and promise. There is a survivors weekend here. In the world of pediatric cancer the word “survivor” doesn’t mean what it means on CBS. Survivor means five years. When I first heard this I cried. Five years? I wanted a cure. Then I came here. There are over 14,000 brain cancer survivors at St. Jude’s. That is where my focus is, or at least that is where my focus always returns to, when “the schedule” gets to me – St. Jude’s can send me home with Catie as St. Jude’s 14,001 survivor. That thought carries me through so many of these days and nights. That thought and knowing that I was created by a God that knows me and loves me and has made plans for me…God also has plans for Catie and all the children here at St. Jude’s. “For I know well the plans I have in mind for you, says the Lord, plans for your welfare, not for your woe! plans to give you a future full of hope. When you call me, when you go to pray to me, I will listen to you.” Jeremiah 29:11-12
Catie had another good day. Calories = 1293. She needed platelets today because her platelet count was below 20,000. Her other counts were more or less the same as yesterday. No blood will be drawn and checked tomorrow. Friday, it is very likely that Catie will need more platelets and a transfusion, as her hemoglobin is almost 8.0. If it falls below 8.0, they transfuse. Catie felt a little queasy when she was getting the platelets but she did OK. Once we returned to Target House she threw up. Less the ten minutes later she was happily sitting at the table taking a math test. Twenty minutes later she was eating chicken tenders. The rest of the day she was her delightful self. And so goes another day.
Each moment I try to see as a blessing. Each struggle I try to see if there is any way I can fix it for the next parent in my shoes. Each smile from Catie I cherish. Each giggle I share as best I can (some of the things that make a seven year-old giggle are just silly). Each person’s cancer is different. Each family is different. Each child with cancer is different. Each hospital is different. That is why we are here at St. Jude’s. St. Jude’s is trying to take care of all of the different children and their different cancers. Catie’s cancer is rare but not as rare as Catie. Each day is different and I’ll tell you about tomorrow tomorrow.
Good night and God Bless from St. Jude’s,
Christine and Catie
