As I mentioned before, we’ve been home since the 1st of July, goodness it’s nice to be home!! W and I have spent probably the last 4 1/2 out of almost 8 months in hospitals. Him in a bed of course and me mostly sleeping in chairs! The stay at Sick Kids did afford me the use of a bed/couch area in his room which was such a blessing! I don’t think my back and neck could have taken too much more! lol
The first week was pretty basic, just some low dose chemo to prepare but the second and third week were hellish! I do not wish that on anyone, to watch my child go through it was surreal and scary as f*ck! I knw I don’t normally swear but ….. I just can’t even begin to explain the feelings.
He lost the ability to use words properly, what he wanted to say and what was coming out was all jumbled for a few days. He couldn’t see much, his face was swollen and his eyes bulging out and hurt like hell. He couldn’t even walk well or do the simplest of tasks without getting confused and turned around.
Trying to get him to the washroom was something else! Let me tell you. He is bigger than me, taller and heavier and he could figure out how to sit or place himself properly etc. I’ll spare you the rest of the details but I’ll say that was the most afraid I have ever been in my entire life.
I don’t scare easily, I don’t tend to lead with emotions. I’m pragmatic and no nonsense, I get to the heart of the issue and take care of business. With a clear head and a plan, everything works out as it should ….. not this time!
Thank god for the nurse who was with us those few days, she even came in on her day off for an extra shift just to be on W’s care. I think I may have very well lost it if not for her. Bear was not with me as he was travelling back to work Mon to Fri and then with us on the weekends. While there he also stayed in the apartment while I was in the room with W over night.
The worst night I did get close to calling him in, it was a weekend and he was there …. I doubt anyone would have stopped him at the door. They are quite understanding there, I just can’t say enough for those folks working everyday to help kids and parents through this. Anyway, i got about 45 mins sleep that night and was very glad to see him (Bear) in the morning!
The first weeks were hard but the next few weren’t as bad. We were still stuck in TO but at least W and I were back at the apartment by then. trips back and forth to the hospital a few times each week but it was a 10 min walk away and we had a wheelchair for W, so it worked!
By the first we got the all clear once more, the bone marrow and spinal fluid were all clear of cancer and the CAR-T cells are doing their magic destroying all leukemia cells.
We are back to our regular oncologist now and the following Tuesday when we went for a check up he informed us that the next step should really be a stem cell transplant to make sure the marrow starts producing ‘good’ cells not cancer cells going forward. Basically, it our best way to try to ensure no more relapse!
Say what now … !?!?!? We were not expecting that. We thought it would be checkup and such but as long as the cancer was gone, W could be done with all the big procedures. We all got a bit of a surprise! Nothing finalized yet but we go back on the 5th of August and I imagine we will get more clarity then.
This will mean another trip to TO and hopefully back to Sick Kids. We know the people, know our way around AND I can stay with W over night no questions asked. His panic attacks are all but gone and he has made huge strides in his anxiety BUT it’s not going to just magically disappear. Any time I was away for more then an hour or so he would text and start asking when I’d be back. I’m going to go out on a limb here and assume he is still not ready to be in hospital over night without me. But that’s a problem for another time …
If I understand correctly the stem cell transplant should be done around 3 months after CAR-T in these cases which would see us back to TO likely the beginning or September, since his CAR-T transplant was June 3rd.
In between all this Bear and I have taken any opportunity we can to strengthen out dynamic. I think it’s probably more intense now than it had been in a long time, maybe even ever really. Since we were moving towards a more M/s centered feel before all this began, we have picked up again in that same vein.
I’ll take it while I can, fill up on that energy that keeps me balanced while we are afforded the time and space to do so and let it carry us through the days we focus solely on W and his recovery. It’s a strange dance back and forth some days but we (the 3 of us) are all getting what we need and when.
I can’t say I can ask for more at this time. 🙂
Hope you are all well and happy on this Monday morning!