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January 21, 2005

Friday (1/21/05)

Sophie was diagnosed with Acute Lymphocytic Leukemia on January 21, 2005. She was two years and nine months old. She had been experiencing unusual bruising for about a week and seemed tired and pale. When the bruises were accompanied by little dots (tiny bruises called "petechiae") we decided to take her to the doctor. After a quick morning trip to the doctor, Susan took Sophie for a blood test (anemia was suspected). A few hours later, the doctor called to say he wanted Sophie to see a special pediatrician in Raleigh and set up an appointment for later in the afternoon. The pediatrician called a short time later and said he wanted us to take her directly to the hospital, either UNC or Duke. We chose UNC because it was affiliated with her primary care physician. We arranged care for Elisabeth (6) and arrived at the hospital at 4:00. By 4:30, they were telling us that they suspected she had Leukemia. They took another blood sample to confirm the earlier results, which showed her white blood count at 50,000 (10,000 is normal) and her platelets at 8,000 (150,000 is normal). We were admitted to the Children's Hospital. They immediately gave her a platelet transfusion. This was preceded by a routine infusion of Benadryl to prevent a possible allergic reaction. She had a paradoxical reaction to the Benadryl, which meant that instead of relaxing her and making her sleepy, it made her very agitated, and she was hysterical for 6 hours (11:00 p.m. to 5:00 a.m.). Needless to say, our initial hospital experience was a negative one.

January 27, 2005

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.