Sunday, December 20, 2009

Some Details

While I generally like to write about thoughts, events and emotions, I feel I know enough now to fill in the gaps about the Leukemia Sam has. The term leukemia refers to cancers of the white blood cells, which are also referred to as leukocytes or WBCs. When a child has leukemia, large numbers of abnormal white blood cells are produced in the bone marrow. These abnormal white cells crowd the bone marrow and flood the bloodstream, but they cannot perform their proper role of protecting the body against disease because they are defective. There a different classifications for Leukemia. About 85% of childhood ALL (Acute Lymphoblastic Leukemia) have B-cell ALL.

Sam, being a Zweig, has to go for the rarer form. About 15% to 18% of children with ALL have T-cell ALL. This type of leukemia affects boys more than girls and generally affects older children more than does B-cell ALL. It often causes an enlarged thymus (which can sometimes cause breathing problems) and may spread to the cerebrospinal fluid (the fluid that surrounds the brain and spinal cord) early in the course of the disease. Luckily, although Sam had a huge mass of cells filling his chest, he did not have CNS leukemia. Phew! The mass was blasted away with chemo and should not come back. The cancer may appear in the CNS if Sam has a relapse. (Which he absolutely will not!)

How well a leukemia responds to the initial (induction) treatment has an effect on long-term prognosis.

A remission (complete remission) is usually defined as having no evidence of disease after the 4-6 weeks of induction treatment. This means the bone marrow contains fewer than 5% blast cells, the blood cell counts are within normal limits, and there are no signs or symptoms of the disease. A molecular complete remission means there is no evidence of leukemia cells in the bone marrow, even when using very sensitive lab tests, such as PCR. 

Minimal residual disease is a term used after treatment when leukemia cells can't be found in the bone marrow using standard lab tests (such as looking at cells under a microscope), but more sensitive tests (such as flow cytometry or PCR) find evidence that leukemia cells remain in the bone marrow.  Sam was given this test and it came back at 2% - considered full remission. 

Active disease means that either there is evidence that the leukemia is still present during treatment or that the disease has relapsed (come back) after treatment. For a patient to be in relapse, they must have more than 5% blast cells present in the bone marrow.

Children with ALL who have especially high WBC counts (greater than 50,000 cells per cubic millimeter) when they are diagnosed are classified as high risk and need more intensive treatment. Sam had a count of 350,000 cells so he is very much in the high risk group. he responded very well to treatment, however, so his prognosis is as good as for lower risk kids. Now the doctors have worked out how to treat each type and risk group, there is a much small gap.

We take one day at a time and also study the counts given to us at each clinic visit.  The most important data for us lay-people includes the hemoglobin, WBD, platelets, ANC (Absolute Neutrophil Count) and the Mono Count.   We received and sometimes do not receive these counts at each visit or hospital stay.  There are gaps which will be filed as I locate other printouts and include them on the chart I am now using to record it all.  I am sure Dr. Cole  will explain to me why there is such a drop in some areas when we are now in a less aggressive part of Sam's treatment. 

School is now fine even when Sam has an ANC of zero...meaning he has no immune system...but he cannot eat strawberries or grapes!!!!!!  Sam needs to have an APC count (ANC plus Mono count) of 1100 or more to begin each cycle of far he has been delayed once.   We want to start tracking his counts to look for patterns as he goes through each cycle so we can predict when he will be neutropenic and when he is able to be less cautious and eat more normally etc.  We hope to work it all out before he is officially declared cancer free and a long term survivor...if not, we'll be happy with the knowledge that we made it despite ourselves :)

If this makes no sense at all...there is an excellent website linked to this post to help you understand it all.  I am sure I will read this post one day and laugh at my attempt to explain it....I'm far better at the emotional stuff :)


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