Friday, September 21, 2007 - Madeline is sitting on her bed with her new Build-A-Bear "Mickey Ignatius Hamburger," and reading one of the Princess Diary series. She is lovely with her new short haircut, twiddling her hair with one of her fingers. She has a sheet over her legs and she looks quite cozy. Today, she'll have a little more freedom to roam, as they'll stop the IV drip of fluids for a few hours.
We found out yesterday that although her body is responding well to the chemo treatment, she did not make the rapid early responder of less than 5% leukemia cells (remission) after one week of treatment. With the marrow aspiration they found very few cells (and she had marrow FILLED with leukemia cells), but of those 50, 24 were leukemia cells. Apparently, 50% of children make it to that benchmark by day 7 and the other 48% make it to the "remission" by day 15. This is an important milestone--if she doesn't make it by next week, her protocol (treatment) will change to include low level radiation to her brain.
OK-- it's about then that a crack in my survival demeanor let out panic and fear and I started to cry uncontrollably, upsetting Madeline. Luckily, Trey arrived with Julia 1/2 hour later and Madeline told him "I was freaking her out." We talked about the positives and assured her (and ourselves) that her treatment is progressing as anticipated. We ate dinner together, pulled out the visitor's cot for Julia to try while watching a movie (Spirited Away) and I sat between my two daughters both snuggling in their beds and ran my hands through their hair, marvelling at the unexpected joy of being here with my family, safe and loved, in contrast to the fear that was overwhelming me just a few hours earlier.
I will be holding her in my heart all week hoping that she makes the "remission" and I'll try to do this without "freaking her out." Someone who knows told us "don't focus on the negative, it doesn't help." And they are right, it doesn't. I can't go down that path, it's simply too frightening, and it doesn't help. Love, Chris
Day 12: Mickey Ignatius
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3 comments:
Hey Chris, it's me, anonymous Jane. Just read today's news. Saying prayers for you, asking for strength for all of us. Mady is a strong girl. So is her Mom. Not many could put it all out there as you are able to do. Love to all from all of us.
You are precious Mady and we love you! (Mickey is kind of cute as well)!!
Hi Mady and Julia and Chris and Trey
Just to let you know that Austin sends sunshine and loving thoughts your way. Connor is making cinnamon toast and sends an air version of it your way to cheer up your Saturday morning.
Chris, the friend who encouraged gentle focus on the positive was on the right path. Your endorphins will be your friend.
Much love,
Charlotte and Connor (Donna is a work)
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