Wow - a lot of information over the last couple of days. Last week Thursday - 19th - Jonathan was scheduled to have his bone marrow aspirate and MIBG scan done. This involves him getting anesthesia which requires him to not eat anything solid / food from midnight. Well, I don't know what happened but we - both Gabby and I - clean forgot about taking off his feeding pump and it wasn't until 7:45 am that I realized that he was still hooked up! It meant that Jonathan couldn't get any anesthesia and I had already planned for Jonathan and I to (both) have hearing tests done on Friday (27th). I was so disappointed because I was looking forward to the hearing tests that I had taken a day off - but with us forgetting to stop his feed it mean the bone marrow aspirate had to be pushed to Friday. The only good thing that came out of this mistake was that Jonathan got sedation, instead of anesthesia, to do his MIBG scan. Since he did so well on sedation then for future scans that's what they'll use.
The other significant thing that happened was that on either Tuesday night or Wednesday morning - I forget which one - Jonathan and I was having a discussion about whether he will stay still for the MIBG scan so that he doesn't have to get anesthesia or sedation (in this case). Besides getting the usual response that he doesn't want to stay still and that he wants the sleepy medicine - I found out on Thursday afternoon - while preparing for the MIBG scan that one of the reasons for the push back was that Jonthan was having major issue with his biopsy. (On a side note - that is a really long sentence). Apparently he wanted the sleepy medicine because he didn't want to feel the needles go into his back, he doesn't want to feel the cuts.
I was completely taken aback - because I don't know how he can feel any needles going into his back. Normally he is put to sleep, the biopsy is done and he is woken up. Of course I tripped out. I immediately penned an email to our nurse practitioner and our oncologist with my concerns and to investigate whether he gets enough 'sleepy medicine' when the procedure was being done. The problem was - I didn't know if the problem was that he goes in for a procedure and wakes up with pain in his back - where the two holes are done for drawing out the sample of bone marrow. In any regards - the experience - perceived or not - needed treatment. So we've in the process of getting Jonathan to see a psychiatrist.
Shifting gears completely - we got the results from his MIBG scan and biopsy results. The scans came back clear - which was excellent news. Keeping in mind that his previous two scans were also clear but the significance was that we didn't know if the (bone) pains he was getting up to five days after finishing the IL-2 and ch14.18 treatment were due to the cancer returning or due to the IL-2. I think even our oncologist was a little concern and with the MIBG scan coming back clear (or negative) it means that there is no new tumor involvement.
His bone marrow aspirate results were a little interesting. Everytime that Jonathan gets an aspirate done - it involves taking two samples from his lower back. This is the first time that one sample came back negative while the other side came back positive with marrow involvement of less than five percent. The thing is - we don't know if the sample that came back negative is due to sampling error or whether the ch14.18 protocol is working. We've been told not to read too much into it and it's sound advice. I'm just ecstatic that the pain he was experiencing during the second round wasn't due to cancer involvement - cause that would have just crushed me to find out that it's getting worse.
The last piece of good news (at least for this journal entry) is that Jonathan's appetite has returned. Although Jonathan still gets his NJ feedings every night - we suspect that since it's an NJ tube vs an NG tube - with the feeds emptying into the upper regions of his small intestine vs his stomach means that he would get the feeling of being full. In any regards, although his appetite has returned he doesn't eat enough for his body's needs since his intact has to be 1.5 times a normal person's daily allowance. But - all in all - it's been a good week or so ...
No comments:
Post a Comment