One more day and Jonathan will be done with testing to re-evaluate his cancer. We are hoping that the news is that he is free of disease or as they say on the neuroblastoma website - NED - no evidence of disease but somehow I think that will be too hopeful. Today Jonathan has his bone scan done. He is still in the hospital - recovering from the effects of the anaesthesia that he was under but hopefully he'll be done soon. He should have been released already but his blood pressure is high (taken on his leg it is above 160) but Jonathan refuses to have the nurse take his pressure on his arm so Gabby is stuck there for the time being : (. I know how stubborn Jonathan can be - bull headed is more like it - but I'm hoping by the time my train reaches Palo Alto he would have calm down enough for the nurse to take his pressure and it is low enough for them to release him.
Tomorrow - Jonathan has a CT Scan - and that lasts about 15 minutes so he doesn't need to get 'sleepy' medicine (as we fondly call it) so hopefully he'll be in and out of there real quick. The problem with taking anesthesia is that Jonathan has to stop eating from 12 am the night before and his scans are normally in the afternoon so by lunch time he is very hungry and gets very irritable (what's new?). Hopefully he stays quiet for the 15 minutes so he doesn't have to get the 'sleepy' medicine.
After tomorrow Jonathan has less than a week before he starts his stem cell transplant - initially targeted for Monday 8th August. Originally I was going to object to the stem cell transplant if Jonathan still has evidence of disease but I think I'm going to go ahead with whatever our doctor recommends. One of the interesting things she said during our consult last week is that some cancer treatments are not a cure but more of a way to prolong (the quality of) life. It was an interesting statement because my expectation was that once things go well Jonathan will be cured. Of course there is always the possibility of a remission occurring but I never thought of it as a way to prolong life and not a cure. It does put an entire new twist to things but surprisingly I'm rather calm about it.
I think part of the reason I'm calm is that I've already started to consider comfort care for Jonathan. Not that I am thinking of doing that now - but for the future. It's an issue that Gabby and I disagree on but it's something we don't have to come to a decision on right away. In brief, Gabby feels if Jonathan has a remission later on - we should fight as much as we can with as many treatments as can, whereas I feel there is a certain point in which I wouldn't want to fight and continue to subject Jonathan to the pain and discomfort of treatment. Hence at some point I will prefer comfort care - in which Jonathan is made comfortable with pain management and allowed to die peacefully. As I've said, Jonathan is doing fine now so these decisions are far from being made but I went through a period in May / June where his suffering really affected and thus started this train of thought.
So the big plan now is to enjoy this weekend. Gabby's and Arielle's birthdays are at the end of August - the 23rd and 19th respectively - and since Jonathan will be in the middle of his stem cell transplant recovery he wouldn't be able to attend. Instead we've decided to have a combine Gabby and Arielle birthday party this Sunday (7th August) similar to the combine Walter and Jonathan birthday party we had in the month of May. We've definitely inviting more people this time but keeping the food simpler so it should be a blast! I know the kids are looking forward to it - and the cool thing is that this will be Arielle's first birthday party. She even has a princess outfit to wear which she is very proud of. Of course I'll be taking lots of pictures and will hopefully post some up for our family and friends to see.
Work wise - things are going okay. We are slowly getting to that time where we have to work weekends and I know this might by an issue of contention - since working weekends will be most difficult for me. I'm curious to see how the next couple of months ago - since I can already feel my stress levels regarding Jonathan's care are increasing and the pressures and demands of work is also going up as well. My hope is after all of this - somehow I'm a better, and stronger person. The only thing now is for me to lose this weight!
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