Another weekend went down the toilet! To make it worse it was the second weekend in a row (at least)! The independence day weekend was spent at the hospital as Jonathan went through his sixth round of chemotherapy - while this weekend (just gone) was spent at the hospital because Jonathan was F&N (Fever and Neutropenia). This means that Jonathan got a fever while his white blood count was at 0.1. In this scenario - Jonathan's immune system is compromised and he is unable to fight infections on his own - so he's carefully monitored in the hospital while getting antibiotics, hydration, etc...
It started on Saturday afternoon - when Jonathan had a short nap. He woke up feeling warm - but we weren't sure if that was because he had just woken up from a sleep or because the day was hot or a combination of the two. We left home around 8 pm for a 2 1/2 hour drive to Fresno to see my brother. The night before (Friday) we got quite a scare and thought that his wife was going into labor but by the next day we realized that the contractions were false. We arrived in Fresno around 10:30 pm and probably went to bed around 12 am. Around 3:30 am, Gabby woke me to tell me that Jonathan was whimpering and had a fever of 100.3. It confirmed what I was hoping was not true - and that Jonathan had caught some sort of disease and his fever would only get worse.
For a quite who is immune suppressed - if his temperature reaches 101.3 then he has to go into the hospital (ER) immediately to start a course of antibiotics. In our case - since we were at least 3 hours away from Stanford - we didn't want to take the chance and wait to see if his temperature would reach that high and then realize that we are too far away. So by 4 am Sunday morning we were packed and ready for the drive back to San Jose. Fortunately Gabby was all rearing to drive - because I was too sleepy to do any driving. The unfortunate thing is that with my long commute to work - I normally use the weekends to rest up and that clearly didn't happen this weekend.
I remember as we were heading off to the highway to leave Fresno - I called in Jonathan's situation to the pediatric oncologist on call at Stanford and she was saying that if his temperature did indeed reach 101.3 then she would have had us checked into the hospital at Fresno and then have him transported to Stanford. For some reason I didn't really want to do that because I didn't know anything about Fresno's hospital and I trust the care I will receive at Stanford. The other thing to is that if the medical team at Fresno were unaccustomed to seeing oncology patients - then that might have complicated things and my blood pressure would have risen that night : ).
We finally reached home around 6 am - Gabby claims that she wasn't speeding - and I suspect that with the road being relatively empty she was able to make better time - and Jonathan's fever had dropped below 100. We knew Jonathan had to go into ER but we were hoping that his condition would not get worse so that on Monday he could go to the day hospital instead of going through ER. Unfortunately Stanford does not have a procedure where F&N oncology patients could get admitted directly to the ward and with the pediatric day hospital closed - our only recourse was to go through ER in which case he'll get transferred to the pediatric oncology ward.
With Jonathan continuing to be lethargic and not eating nor drinking and his temperature gradually rising - we decided that he had to go into the hospital. So Gabby left home around 6 pm and went up to Stanford with Jonathan. Things are going okay - we are waiting for his counts to start coming back up - which should be any day now - and then the healing could begin. Jonathan hasn't been eating for the last four / five days - because the side effect of the chemotherapy treatment was to make his throat and track sore but hopefully by the end of the week he'll be eating again.
We are hoping to have an NG tube placed in him to make it easier to give him his medicine and also give him supplemental feedings to start 'fattening' him up - or at least make him less skinny : ). I have never seen the NG tube placement before but I know it's a nasty / horrible process - one that Gabby cannot watch or help - but one which I have begged various doctors to do to me so I can experience it - but to no avail. Hopefully the NG tube placement goes well and it will make it easier for us and for Jonathan - because then he wouldn't have to complain about the medicines tasting yucky.
We are slowing coming to a fork in the road - another major change in Jonathan's life / treatment. On one hand I look forward to it - because it's amazing that he and us have gotten so far, especially with minor complications, but on the other hand I wouldn't have a baseline to compare it to so the experiences are going to be totally new. I realize I don't like new - at least when it comes to Jonathan's treatment because I don't know what to expect and I don't know what is normal or not - in our weird view of the world. We have a consult with the BMT (bone marrow transplant) team and they have already started their tests in preparation for his stem cell transplant. It's going to be interesting and I'm really hoping that we are nearing the end of our journey (probably another 6 months again) and that life doesn't throw us a curve ball. Right now the only curve ball I can accept is winning the lottery : ).
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