It's Saturday morning and I'm sitting on a chair in Jonathan's room, listening to him breathing while he sleeps. We got up early this morning, just before 7 am so his body decided that it wanted to 'reclaim' the sleep it didn't finish get from last night : ) coupled with the fact we probably didn't go to bed until close to midnight. I'm hoping he wakes up soon because the discharge papers have already been done and we are hoping to go to an air & Christmas show being put on by the police department - Cops for (Cancer) Kids - or something similar. We are supposed to me at Yahoo headquarters and then they will bus us over to NASA airbase to the hanger for the police department. There the kids will meet Santa, check out the cool helicopters and planes and have a grand ole time : ). Seeing that we've never done this before - I'm fairly excited to go as well.
So rewinding time - here is the sequence of events as I remember, since my last journal entry. On Monday (11/28), Jonathan had his bone marrow aspirate (biopsy). For this test, they were going to take four samples, instead of two, and also take bone and bone marrow so that we can get positive results. They even made sure to do a special test - an immunohistochemical stain called 'synaptophysin' used to stain bone marrow biopsy cores so that we can be sure of detecting even the trace amount of cancer cells. On Tuesday he had a CT scan and also got injected with the radioactive isotope for the MIBG scan on Wednesday. Our biggest concern on all the days that Jonathan had tests were regarding Arielle because I didn't want to take any more time off from work so it meant that Gabby had both kids with her. The problem is that when Jonathan goes under anesthesia, for the recovery phase, they don't allow kids into that ward, so we weren't sure what was going to happen. But, as luck would put it, Gabby got the 'ok' to take Arielle into the ward each time. We figure the real reason behind the ok is that Jonathan is a kid who doesn't care who is around, if he wants his mommy or daddy, he can be very stubborn and very LOUD, and we figure that the easier option for the nurses were to let Arielle come into the ward : ).
On Wednesday afternoon we got the results from his biopsy. It was still positive, but at approximately less than 5 percent, so a very small amount indeed. For once in my life, getting positive results was good news, because it meant that Jonathan is guaranteed to get the ch14.18 (immunotherapy) treatment and I didn't have to worry about hoping he was randomized on the study. On Saturday he started taking the GM-CSF, a medicine that promotes his immune system, and three days later, on Tuesday (12/6) he started receiving the (chimera of mouse and human) antibodies.
My biggest fear for the ch14.18 study was that receiving the antibody treatment is a painful experience. When a patient is receiving chemotherapy, the anti-cancer drugs work by attacking fast growing cells, but doesn't differentiate between good and bad cells, so that's why one of the side effects is hair loss. When a patient is receiving immunotherapy, the treatment process has a side effect of attacking nerve cells - hence the pain that can be felt throughout the entire body and hence my fear. Of course the patients are given drugs to counteract the pain, in Jonathan's case he got morphine.
So, around 2 pm on Tuesday, Jonathan started to get the antibodies. They are delivered as a fluid via IV through his central line. The dosage started at 5 (don't know the unit of measurement) and increased by 5 units every half hour until he got to 20 units. So at 2 pm - he was at 5 units, at 2:30 pm - he was at 10 units, etc, until at 3:30 pm he was at 20 units. Once he is up to full strength - then he gets 20 units for an additional 4 hours. My fear was that he couldn't 'ramp' up to the full dosage because another parent was telling me about his son's experience where at 10 his son would become uncomfortable, and at 15 his son would be crying out in pain, so they had to stay at a lower dosage but given over a longer period of time.
With Jonathan, he was able to ramp up to the full dosage on Tuesday and Wednesday, but on Thursday and Friday he only went up to ~ 15 units. The good thing now is that it's done - we have completed cycle 1 of the immunotherapy - 5 more to go. Next week Jonathan starts another treatment - the cis-retonic-acid treatment - but I'll talk more about that next week.
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