So yesterday we both tried to make it through the day on essentially no sleep, and I was not as on top of things as I should have been. I mentioned the eye to every doctor that came in, but no opthamologist ever got here, I also failed to notice that the atarax was not being given, it was written for as needed/requested vs around the clock. So now I will show you what the eye looked like, those that are queasy may want to keep scrolling!
Now on top of it being swollen up, I caught Con with his patch off and hand under his eyelid, it was hard to even see the eye to even assess damage. Well needless to say no one did anything about the eye, around 6 pm, Dr. G. came in to say hi, and I mentioned I was very concerned about the eye, she says back up I don’t know about the eye, I tell her she takes one look and says this is an emergency. I have no idea what Dr. G. is like to people she works with, but all I know is she gets things done, the fellow rushed in very concerned and the attending on this week came in to specifically ask about the eye and to tell me he should have told her. I just explained to them that I have spent almost as much time on the eye as I have the cancer and she has been with us every step of the way. Also, the larger concern is that a tear could lead to an infection and while an infection in the eye typically stays in the eye there are no publications or studies what happens with kids who are having bone marrow transplants and the idea is we don’t want Connor to be the first. So Dr. G. Got them on the phone told them it was am emergency and they needed to come up, so we waited, the ETA was between 11 and midnight so finally around 10, since Con was falling asleep, as was I we all talked and agreed to do atarax around the clock and have them come first thing! Well the good news is no tear!
Other than that Con is doing great, started eating solids after sharing a grilled cheese with Grandpa, not a ton but enough for everyone to comment how great he is doing. The idea is hopefully we should see our first neutrophils next Mon/Tues, after this he should start coming up, once he passes a threshold of a certain amount of neutrophils and is eating and drinking we go home. Dr. G. Thinks since he came into this cycle so healthy and has continued to eat we could go home just when there is a clear upward trend and finish recovery between home and clinic, this would be the only cycle like this, don’t want to get our hopes up too much, but fingers crossed, we could possibly get 7-10 days at home versus 2-5. We also discussed that if you model out cycle length on the calendar, our target end date is December 22, putting Christmas in jeopardy, we don’t need any “things” for Christmas this year, I can’t think of anything that would be better than a cancer free Connor done with treatment and at home. We already know that Thanksgiving will be in the hospital so I said to her, while I have historically asked for the extra rest days or to get a weekend at home as a family, at this point, the finish line is coming and we need to cut out days where we can so we can be HOME for Christmas!
Oh and fever for the most part has been staying away, at this point Con is less fevoral than Claire whose fever keeps coming back, poor Claire Bear, no school again for her today😢
Right now Con is enjoying play therapy- this kid is nothing short of amazing!!!!