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Thursday (1/27/05)

Sophie has what's called Acute Lymphocytic (also called Lymphoblastic) Leukemia (ALL)--we received the official diagnosis on Saturday, 1/22. It's the most common form of childhood Leukemia, and it has the best prognosis. Her treatment will last for about 3 years, and she'll actually technically be in remission during the first month of treatment (we hope). The treatment is really there to keep it from returning. She's on a short course of steroids, and she is taking 4 different kinds of chemotherapy (two by IV, one in her spine through a spinal tap, and one through a shot in her thigh muscle).

On Sunday, she had surgery to insert a chest catheter that they will use to inject medicine and draw blood so they don't have to stick her veins every time they need something. She has what's called a broviac catheter, which means that it sticks out of her chest. This requires extra care, but once she's used to it, it will be less painful than the kind that are embedded just underneath the skin. They did a bone marrow biopsy and a spinal tap at the same time. The cells from the spinal tap showed no signs of Leukemia in the spinal column, which is good news. Her first chemo injections began on Monday, when her white blood count had gone up to 66,000.

After having skyrocketed, her white blood cell counts are currently very low, which means she's at risk of infection, but it's a good thing, because it means the chemo is working. The chemo can cause problems with organ functioning, but the doctors are keeping a close eye on that, and she's not having any problems so far.

Yesterday, she slept nearly all day but perked up at night (partly due to a very fun visit from Jamie, who had her singing at the top of her lungs). The fatigue is probably due to anemia, because her red blood counts are low too. They'll give her a red blood cell transfusion today after her chemo shot. The steroids haven't started making her cranky (yet!), and she didn't throw up at all yesterday, so the nausea seems to be getting better. The doctors said she might be able to come home over the weekend, but she gets the two IV chemos and the spinal tap on Monday, so we're going to just stay in the hospital until Tuesday (assuming she's recovered from the Monday activity).

She's just such a happy little kid, and we feel lucky to be getting to spend so much time focused on nothing but her. We have every hope that she's going to beat this, it's just a matter of how hard the treatment is going to be on her, and figuring out how to change our lives to make it all work.