It's interesting that nothing is ever constant with Jonathan's treatment. As a parent or even as a patient - you have to go with the flow and adapt constantly. It's a pity I cannot use this learning experience at my place of work : ) but our expectations regarding Jonathan's treatment are constantly changing. On Tuesday (20th Sept) we had a consult with the medical team and they were surprised that Jonathan's white blood count (WBC) has not begun to increase. For autologous stem cell transplant patients - patients that receive their own stem cell - the body would NOT reject its own stem cells and WBC production should start to occur and be detectable by day 12. On Tuesday it was day 26 and his WBC has been hovering around 0.2.
Although Jonathan has not shown any WBC production in a drastic way - there was an increase as it went from zero to 0.4 and finally hovering around 0.2. One belief (including my own) is that his stem cells did graft and his body is producing WBC but all the WBC are being diverted to the 'damaged' areas of his body and his bone marrow cannot produce enough WBC. This 'theory' is augmented by the fact that healing has occurred within Jonathan's body - as evident by his mucusitis in his mouth and digestive system getting better and he does not have any more fevers. In either scenario - his stem cells not in-grafting or his bone marrow not producing enough WBC - he still requires more stem cells. So, on Wednesday (yesterday) he got a boost of stem cells.
Now it's a wait and see over the next seven days. Hopefully his bone marrow kicks into full gear - but in the event that it doesn't - then he'll get another boost of stem cells. The good thing is that he has all these extra batches of stem cells to use because in some cases patients are unable to produce enough stem cells for the collection earlier on in their treatment cycle.
So here goes the longer version of this explanation:
When Jonathan first signed up for the treatment of his cancer - he got signed up for a trial treatment. For neuroblastoma - and I'm sure in a lot of other cancers - the treatment plan is not 'cast in stone' and the medical world is still trying to determine what is the correct sequencing of treatment plans and the correct dosage of drugs to use. For Jonathan's disease - the trials generally gather information for a five year period in which the information gathered is reviewed and improvements made to the trial.
Part of Jonathan's trial involves the collection of (his own) stem cells (via his peripheral blood) after his second cycle of chemotherapy drugs. When his stem cells are collected - the lab checks for any signs of (detectable) tumor and if no tumor cells are found - his stem cells are frozen and stored for use later in his treatment cycle. The BMT (blood and marrow transplant) team normally tries to collect 'extra' stem cells in the event the patient requires more at a later date. Some reasons for requiring more at a later date include the event that the cancer comes back.
For Jonathan's trial - there is another portion of the trial where patients are randomly chosen to go on the 'purging' arm of the stem cell collection. For the purging arm - after testing the stem cells for 'detectable' tumor cells - the tumor cells goes through an extra 'purging' process. In the purging process, anti-bodies are added (among other things) and they act as magnets to attract (undetectable) tumor cells. The stem cells then goes through a purging process in which the stem cells are put through a centrifugal type machine to extract the 'magnets' with the undetectable tumor cells. The advantage for the purging arm is obvious - although there is no evidence that confirms this - but the study is trying to determine whether the rate of re-occurrence of the cancer is reduced for patients on the purging arm. The disadvantage of the purging arm is that a lot of stem cells are damaged in the process.
So - during the consult - we had to make a decision on whether to use the second batch of purged stem cells or whether to use from the backup supply that Stanford has - which did not go through the purging process. Initially, I was thinking to go with the backup supply but changed my mind to go with the second batch of purged stem cells. Hopefully this boost does the trick and Jonathan starts to recover.
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