This has been an interesting induction phase for us. It's been a little tougher because we've seen Jonathan's counts taking much longer to recover - an indicator that his bone marrow has been slammed a lot by the chemotherapy treatment. His body is weaker and is thus taking longer to recover. On Thursday, Jonathan's blood results showed that his white blood count (WBC) was around 2 and his hemoglobin was at 8.3 (a drop from 9.x earlier in the week). I remember having a couple conversations with the nurses that we should consider a blood transfusion because my fear was to have Jonathan go through the weekend and his counts drop dangerously low. The nurse practitioner was saying that his hemoglobin was not low enough to have a transfusion (it needed to be less than 8) and plus the day hospital was so booked up that some patients may have been handled by the oncology department. So on Thursday we agreed to have another blood test on Friday so we can gauge how fast or slow his various counts might be dropping.
On Friday, Gabby dropped another blood sample in and I remember getting a call in the early afternoon that his hemoglobin has dropped to 4.x. This was a rapid drop and dangerously so. They wanted Jonathan to come back in immediately! They wanted to take another blood sample (to re-verify the results) and start a transfusion in the afternoon. We were very concern and I remember Gabby asking them if the rapid drop may have been due to a secondary cancer developing, such as leukemia. Of course that kind of threw me into a spin - but since I was at work I was busy so I (deliberately) stopped focusing on this (potentially) new development. The other thing that started to happen on Friday was that Jonathan developed a cough. During his blood transfusion his cough got worse - sounded very horse - which actually got Jonathan very concern and afraid. Gabby tells me that Jonathan started to panic and it took a while to calm him back down.
On Saturday Jonathan started to have these very low grade fevers and just after 10 am he started to complain about his head hurting. We were not sure if it was the virus causing it or an allergic reaction to the blood transfusion. We decided to call the pediatric oncologist on call who wanted another blood sample so we could make sure that his counts were okay and that this was just the virus going through its phases. By Saturday afternoon we found out that his counts were okay and it's probably the virus - which might also explain why his counts dropped so drastically on Friday as well.
What was interesting was that all though-out my conversation with the nurse and nurse practitioner, I remember telling them that my 'flags' or warning bells were going off. I didn't have any specific (hard) reason but I just knew I was very worried for Jonathan and I was trying to push back on the bone marrow aspirate on Monday. When I got the news on Friday - I remember telling myself - it's a good thing I pushed to have his blood re-checked on Friday before the weekend - because I don't know what would have happened over the weekend if he didn't get that emergency transfusion on Friday.
This has added more fervor to my mind that I'm ALWAYS going to act on my instincts now. Regardless on how crazy I may sound or that we may not have all the medical indicators - if I feel uncomfortable or my warning bells are going off I am going to push as hard as I can. Part of the reason is that Jonathan has been going so good that (I suspect) sometimes they let things go and as such they are really depending on us (the parents) to let them know if there are any changes in Jonathan.
The other significant thing that happened was about 1 1/2 weeks ago when I was traveling to work. Of late, I've been falling to sleep every morning on the train and on some occasions I don't get up until everyone have cleared out of the train. Fortunately for me, my stop is the last stop so I don't have to worry about missing my stop. But I cannot say that for the bus (which I take to the train station). On Friday morning (13th) I fell asleep on the bus and didn't wake up until the end of the line. To give you an idea on what that means - I took the 6:52 am bus, my stop was around 7:25 am, and I woke up at 7:50 am! Needless to say, I had to work my way back up the line to get to Caltrain to get a train to San Francisco. After that occasion I've decided - no more sleeping on the bus! I still sleep on the train - but I don't want to take a chance on the bus!
I do know that Gabby and I are getting very tired / exhausted with the treatment. I know we still have at least four more months of active therapy before it's done AND that is assuming that he responds well. If he doesn't respond well ... well I don't even want to think about it. As they say ... one day at a time ...
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