Whew - last week is over! On Wednesday night - when I came in for 'my shift' - I told Gabby to sleep in late on Thursday. I know she was very tired and with her not sleeping well in the nights, the extra hours in the morning would definitely help. So I told her that she could aim for 12 pm and then I'll head into the office. Well, it's a good thing I stayed that late that morning. While the doctors were preparing to round - I found out that Jonathan's liver enzymes were way off the charts. The normal values are around 40 - Jonathan's were around 400 - ten times the normal amount! Although we expected his liver enzymes to rise to maybe double the amount - ten times was a huge jump!
With the enzymes being so high - it meant that his liver had too much toxicity to deal with - so the team got the okay from the study panel to take Jonathan off the IL-2. If his liver enzymes went down sufficiently the next day - then they will restart the IL-2. Unfortunately (or unfortunately) it didn't go down so Jonathan just had his ch14.18 on Friday and we were discharged on Saturday.
The funny thing was that since after his 2nd round - I kept telling everyone - we need to decrease the amount of IL-2 he will be getting for his fourth round. I told our nurse practitioner, our primary oncologist and nobody agreed with me - even Gabby! Gabby and nurse practitioner had some cock and bull story about they don't want to reduce his chances of being able to eradicate his disease, yadda, yadda, yadda. Our oncologist didn't want to change it because they had no 'evidence' aka medical necessity, from the last round that it needed reducing. Well NOW you have the medical necessity!
Yet again - I've made a decision that proved to be right. This takes me back to the stem cell transplant when TWO Attending Doctors wanted to take out Jonathan's NG tube because they felt he was at risk for fungal disease and with his non-existent immune system - could possibly have killed him. One of my concerns was that if we took it out - we wouldn't be able to give Jonathan any oral medication that he needed on a daily basis for his treatment. In the end I stood my ground and we left the tube in and (fortunately) things went well.
So with this episode of the amount of toxicity - I'm concern about stressing out his liver so much so that it stops working (non-medical speak). Jonathan is getting his labs done today - so we'll get a sense of where his liver enzymes are and whether he can start taking the accutane. Although the protocol stays that he should start today - I've very opposed to it right now - so much so - that I deem this as a critical issue - an issue in which I MUST be convinced in order for Jonathan's treatment to move forward. This time I would be putting my foot down - including risking taking him off the study - although I haven't quite reach there as yet. Ok - enough ranting.
The other interesting thing that happen was during the time the doctors were rounding on Thursday - remember I was staying late that day so Gabby could rest. I guess what made it interesting - but I only found out afterwards - was the team - especially the Resident that had to present - thought it was going to be an easy, i.e. step in the room, do their thing, and then leave. The Resident didn't expect to be engaged in a conversation where the parent knew a lot about what was going on and can question the validity of their actions. Afterwards I had to chuckle - because I did give the Resident stress - so much so that the Fellow had to jump in. But in the end - it was all a load of bull crap. The sad thing is - it would be nice if these doctors would come back and say - Mr Seepersad, you were right!
I must mentioned the bull for my own records: with Jonathan needing extra air to get his oxygen levels up - the team wanted to verify that he wasn't getting pneumonia. They thought that maybe he had fluid in his lungs - hence the need for extra air. The problem was that in order to verify, they needed to have a chest x-ray done but I'm opposed to having Jonathan do unnecessary procedures especially if the cumulative effect might have (negative) long term effects. We decided that if Jonathan could stay off of the extra oxygen then we may not have to do the x-ray. So around lunch time I turned off the extra oxygen and Jonathan never needed any more air. We didn't end up doing the x-ray.
But life goes on. That's why I don't waste my time trying to become friendly with the doctors. I maintain a strict professional level with them and keep them on notice. I think these problems arise because since Stanford is a teaching hospital - you never have the same group of residents for each stay. For each of our stays, this year, we've had totally different groups of residents.
Next week Jonathan is being re-evaluated to see if any progress was made. On Monday he has his CT scan. On Wednesday he gets the contrast for the MIBG scan. On Thursday he gets his MIGB scan and we're not sure if his bone marrow aspirate will be done at the same time. So, by the following week we'll get the news. I'm almost expecting it to be positive, i.e. still have tumor cells, but we'll see. Even if the test results come back negative - there is no guarantee that it's correct because the negative result can be due to sampling error.
No comments:
Post a Comment