Just as we thought it was almost over, we are back to playing the waiting game. Yesterday’s blood counts came back flat or even slightly lower than those taken two months ago. With the acceptable margin of error on the machines taken into account these counts are regarded as having remained constant. The MCV count is still slowly moving downward, which is a good sign, because it indicates that the bone marrow function is getting closer to normal, i.e. it is under less stress.
We are a little bit frustrated that we are not off the hook yet. We could still be looking at a full recovery after the first treatment, but it may take many more months or even years. A second set of ATGAM treatments may also still be on the cards if his recovery remains partial.
Lliam’s tests came back with the following: hemoglobin 104, white blood cell count 4.2, neutrophil count 1.3 and a platelet count of 52. This means that his neutrophil count is within normal range. His hemoglobin count is almost there (115 being the target).
The good news is that Dr Juliana is now happy for Lliam to slowly return to a normal life where we wouldn’t have to take him out of school should there be any incidences of chickenpox or flu. He was told he can do headers again in soccer, go on any rides he wants (read Warner Bros. theme park in December), and participate in any sports he wants. Dr Juliana also mentioned that they even perform major surgery on patients with a platelet count of 50, without a platelet transfusion beforehand. Basically she told us to relax, and that he can function very well on the levels that he is currently at. He will just bruise more easily than the average kid. As parents we are still a bit worried though, and will continue to try and tone down his activities just a little bit.
We believe that everything in life happens for a reason, and this plateau would be no different. Already, as result of this disease, we have a much better focus on our family life, and a much greater appreciation of what we have and where we are. Maybe we still need to learn the virtue of patience…
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