Emily has her weekly labs today. We were a little worried because she had developed some sniffles recently, and hoped that wouldn't lower her ANC. We got the results tonight and there was nothing to worry about, Emily's labs looked right on track. I don't normally post the results, but for those who are interested these are the main levels we track. Please keep in mind if you go on the web to see what normal levels are, that Emily is on immuno-suppresant therapy so her "good" levels are not "normal. Her White Blood Count (WBC) was 3.6, Hemoglobin 11.1, Plateletes 300,000, and ANC 2600. These are all perfect as far as we are concerned. She will remain on %100 dosage of 6MP this week.
I have been asked a few times during Emily's treatment how common or what is the incidence of NHL T-Cell Lymphoblastic Lymphoma. I finally have an answer from her NP. I didn't realize how rare her disease was. In any given year, between 40 - 50 females between the ages of 5 - 18 are diagnosed with it. That means there are roughly 600 girls in the US who have it and the US has around 300 million people. There are around 400 cases per year in males of the same age range. It's very uncommon to get at all, and very rare for females. However in Africa about %50 of the diagnosis are NHL. Why Emily had to be one of the 45 last year is hard to even fathom or accept. Luckily the treatment for Leukemia works for Lymphoma, because drug companies are not going to invest in a treatment for a disease that effects so few people, that's just the sad truth.
We don't have much planned in the next week and a half, but last night we lined up a ski trip to Tahoe Donner for later in the month. Emily's Oncologist is also a ski addict like myself and he once told me his daughter is his "ski buddy" just like Emily is my "Ski Buddy" We are really looking forward to the trip.
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3 comments:
Chris,
I think it is great how you keep posting the updates on Emily's progress and I appreciate all of the time you take explaining everything for those of us who want to try to understand. Kudos to Emily for another week of great results...I hope you will have a wonderful time on your ski trip.
Cathy Breit
Dear Chris & Tracy -
I am so blown away to learn that Emily is in such a small group of girls with NHL T-Cell Lymphoma. It makes her very special in a way we don't want to see, but it has also shown us how special she is in how she combats this disease. We are all cheering for her and the progress she is making. She is winning and we all know it. Take care all of you.
Love, Grannie
Those were some pretty amazing statistics. Over the past year we have all gotten to see what an exceptional child she is and how lucky we all are that there is a treatment that is so effective. I hope you all have a great weekend. Sometimes the unscheduled times are the best when you maybe bake a batch of cookies, play board games, or pop some corn and watch a DVD while unwinding from the work week.
Celia
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