Day 13

We had a follow up appointment today to get the results from last weeks bone marrow and spinal tap and also to recheck blood levels(we do that a lot). There is some good news and some not so good news. Good news is the spinal came back clean still, that is great I do not want her to have to go through radiation to her head, and so far that is looking good like we won't have to do that. Unfortunately the bone marrow results did not come back as good as we were hoping. When we started this her bone marrow had been taken over by 60% leukemia cells. For a great majority of kids when they start chemo the chemo will kill off most traceable leukemia cells in the first week, so when they go back for the second bone marrow the tests will come up almost clean. That doesn't mean that they are cured, it just means that they have the leukemia under control. They call those kids fast early responders.
Avarie's bone marrow did not come back clear. She is not a fast early responder. The chemo during the first week only killed off about 20% of the leukemia, her bone marrow is now at 40% leukemia cells. I asked them what that meant and they told me it means they want to recheck it again this week, on Wednesday when we go in for chemo. When they get the results this Wednesday it will give them a better indication. Most likely it will mean that they will have to increase how they are responding to her leukemia. She said it does not mean that they won't get all the leukemia they will just have to relook at her treatment.
I was trying to take that all in and then didn't ask any more questions, of course now that since I have left I have a million questions, like does this decrease her odds for remission? I am writing all these down so when I go back on Wednesday I can ask them.
Also I forgot to ask if the results were back in on the genetic tests on the leukemia, is it a t-cell or b-cell. I was talking to my sister and her research suggests that Avarie's leukemia is most likely a t-cell leukemia. We were and are still hoping it will turn out to be b-cell because it is easier to treat, but since she is already not responding to treatment as well as we had hoped it is most likely going to be a t-cell leukemia. The t-cells are the main immune cells that fight off infection. They are the cells that are attacked in HIV, that is why people die of HIV because their t-cells are destroyed and they can't fight off infection and so they actually die of some sort of infection and not the HIV itself. So we were hoping that this leukemia would not be t-cell.
So we go back in on Wednesday for her chemotherapy and another bone marrow biopsy. I will hopefully come away with a lot more answers then. I won't know the results of that biopsy until the following Monday, but I will be able to ask a lot more questions and get a better idea of what it all means then.
Her blood counts still looked good today. By good, I don't mean good like you or me, but good for her. She is low on everything, but now so low as to need a blood transfusion yet or to be hospitalized for fear of infection. They are low enough to worry about infection, but not too scary yet. That is good, they said her numbers will get lower and lower each week. The chemo just kills all blood cells, not just the leukemia ones, so the further we get into chemo the worse her numbers will get.