Both Jon and I have waves of tremendous emotional sadness that come and go without warning. We've also spent most of our time "waiting" about the "what's next" of our lives. We did finally have that talk yesterday, so I'm starting to feel a bit more "normal" (as normal as I guess one can feel in a time like this), knowing we now have a plan in place.
After Thursday's shocking news and the whirlwind of activity to admit us into the hospital and get us situated, the big focus was Friday's number of procedures. So, Thursday night was actually quite disruptive. We ended up having to do TWO more blood draws (roughly 1am and 2am), and then we did a platelet transfusion around 3am, to prep him for Friday morning's procedures. During the transfusion, they have to monitor him very closely to check if he has any adverse reactions, so they're in every 15 minutes examining him for hives, checking his breathing and heart rate, etc. Amazingly, he slept through most of it - but it was exhausting for me.
Once the sun rose, it was time to prep him for the procedure - which meant wiping him down with these special cleaning wipes to keep his body sterile. It was early, the wipes were cold, and he hated every minute of it. Of course, he pretty much hates every minute of anything the hospital staff need to do with him. :(
We were transported to the outpatient center where the procedures are done - I talked with a nurse and his anesthesiologist while they prepped. They (and everyone at the hospital really) were fantastic in answering any questions I had and briefing me on what would happen in the procedure room and what to expect afterward, etc. I stayed by his side up until he was put under with a general, and did a pretty good job holding it together.
But, the minute I walked out with the nurse, I started to tremble. She just stopped us right in the middle of the hallway and gave me the biggest, tightest, longest hug ever - holding me there while I just sobbed into her shoulder.
The procedure would take between 1-2 hours, so she encouraged me to go down too the cafeteria and get some breakfast or go outside and take a walk. I went to our room first but immediately knew I couldn't stay there, so I headed down to the cafeteria and sat in the courtyard outside trying to distract myself reading silly Facebook posts, but breaking down every few minutes with tears streaming down my cheeks. My phone started to die about an hour and a half later so I headed back to my room to twiddle my thumbs waiting for the call.
At the 2 hour mark I was wondering where my damn call was. :) So I walked over to the outpatient center (everything is all very close by) and ran into a couple of hospital staff I recognized - they helped me find the nurse overseeing Callum's procedure, who let me know they had JUST finished and were bandaging him up, and said he did great. She wanted to check his vitals etc. first before moving him to recovery and calling me - so I went back to our room to wait another few minutes before she called.
When I got to the room he was still totally knocked out - and we probably waited another 45 minutes before he finally came to. He was in a fantastic mood (thank goodness!) - super talkative, tho still a bit drugged out. He had remembered the anesthesiologist had promised him an orange popsicle and asked "Where's my popsicle?" when he came to - so the nurse immediately ran to grab him one and he quickly started chomping on it. Before we left to head back to our room he asked if he could have another, for his brother, which of course all the nurses loved. ;-)
The procedure itself took awhile because they were doing quite a bit of stuff. They successfully obtained a bone marrow aspiration (no biopsy - which I thought was good news - less painful) and conducted the spinal tap, where they also administered his very first dose of chemotherapy. They also put in a PICC line, but had a minor complication with it and had to pull it out and rethread it back in, via X-rays to confirm placement, which is why it took so long. Thankfully, they also took out his peripheral IV, so that we wouldn't have to worry about removing it later. Just before we left, they did a quick blood draw from his PICC and he hardly noticed (just wanted to know where his old IV was) - talk about fantastic!! I was so grateful.
Once back in the room, he and Logan just hung out together watching movies and eating their popsicles. We had several visitors throughout the afternoon - some volunteers from the hospital library stopped by to play games with the boys, the PICC team lead came by to talk to me about his PICC line and how the procedure went (and to give him a stuffed animal!!), we also had several gift packages from friends and family (thank you everyone!) dropped off, and my brother Zane, and later my parents, all stopped by.
Toward the end of the afternoon and into the evening I noticed Callum's temperament changing for the worse. He would get really bitchy, really quickly. He'd be playing on his bed and happy go lucky one minute and without any warning at all, he'd turn into a vicious little crabby monster. The nurses nodded - saying this was fairly common after a big day, and with the general wearing off, etc. But that we should be prepared for the mood swings to get worse, once he actually starts treatment.
Still, I thought about it some more later and decided we probably had way too much activity for such a big day, and I'd need to monitor it more closely and even limit his visits when he has big days like that. It was just too much for him to take.
Friday night was much better for both of us. They did another blood draw (they were checking his blood every 12 hours once we checked in, now we are on an 8 hour cycle!) and decided to give him a blood transfusion sometime in the middle of the night (our doctor had warned us that this would be expected and very likely, given his hemoglobin has been so low - and when it hits a certain number they just give him more blood). I think what this also means for us is that since he's not producing any new blood and the chemo will be killing all bad *and* good cells, it'll mean more transfusions later on, until his body is able to catch up to produce on its own.
So, all that went well but again, because it was a transfusion, the nurses had to come in every 15 minutes for an hour, to keep checking on him. I slept through some of it, but by 4am, poor Callum had to pee - so I helped him with that and then we both conked out until 8am. Phew!
Yesterday was a pretty good day - we spent a lot of time just lounging in the room, waiting for our 2pm appointment with our doctors. Our team of doctors had stopped by the night before to discuss that his bone marrow results were in - so we had a definitive confirmation of leukemia (bummer), but what it also told us was the sub-strain that he has, which will tell us what type of protocol to follow for his chemotherapy. So he is now officially diagnosed with SR B-ALL (Standard Risk B Acute Lymphoblastic Leukemia). It appears this is "good" news (if you are going to have cancer, this is the one you would want), since this sub strain is very common and highly curable. Curability rates land around 95-96%. Also, they did not find any leukemia in his spinal fluid, another great sign - since it hasn't progressed as far within his body and hopefully, means "easier" treatments to deal with.
My parents stopped by a bit before 2pm to watch the boys - they took them around the hospital which was great because it was the first time Callum had left his room (I checked with the doctors the night before on whether he was in isolation or not here, and he is not! So as long as he's wearing a mask outside of his room, he's allowed anywhere within the hospital! They encourage us to walk him around - for his mental health and to also get some exercise and help his bowels move).
I had read a binder-ful of paperwork prior to our 2pm meeting so most of the meeting was pretty straight forward for me and made a lot of sense. Jon and I asked a fair amount of questions, as we always do, but the whole experience made me a bit calmer than every before. We walked through the protocol we'd be following for Callum - what to expect in terms of which meds he'd be taking, how long, how often and which days (and what the side effects to each would be). Me, being the planner, I really appreciated the visual of connecting what was happening each and every day for my little guy. And yes, I've already built a spreadsheet or three, in my head, to help me manage and keep track of his daily treatments moving forward. ;-)
Sometime later in the afternoon we decided to try and get Callum to nap (given his crankiness hasn't let up) - and I took advantage of some of the downtime to rest as well, before Jon and Logan had to leave again to pick up Paul (who was flying in that evening).
At roughly 7pm, I woke Callum up from his nap since we had to get some more X-rays done of his chest - this was one of the precursors to his treatment - to ensure his PICC line was still properly in place before they start administering the chemo. He hated it (you'll notice a theme here). Once we were done with the X-rays, I then gave him a bath - mostly because the doctors wanted the bandages from his back off - but the adhesive was stuck on so well that the nurses suggested soaking him in water first would help. We played and he enjoyed his bath, for a good 30 minutes, until I started tugging here and there to check his bandages, and then he got royally pissed.
Sadly, the 30 minute soak wasn't enough. But he was already out of the bath by then, so our nurse gave me some adhesive remover, in spray form - which of course was cold the minute I sprayed it. :( Pulling as gently as I could, but firmly so I wasn't taking forever, I removed his bandages, all while he was screaming bloody murder into his pillow and saturating it with tears. :( After I removed his bandage I noticed his main puncture site hadn't quite closed up - so in addition to the pain of ripping a bandage off his skin, I was probably also pulling at the (very sore) puncture site too! UGH.
I immediately got some Tylenol in him and when he asked to sleep with me in my bed last night I didn't argue at all. I later moved him to his bed about midnight and didn't wake until about 5:30am. Not sure why or what woke me (I suspect he made a noise) but I got up to check him and unfortunately, his bed was wet. :( I guess it was bound to happen given all the fluids they've been pumping in him!
He hadn't woken from it himself so I decided to wait and see - but by 6am he did wake up and was super upset about the accident. I quickly changed him and laid him back down in my bed to sleep next to me since I could tell he was still super tired (and the nurse was still changing his bed anyway). Amazingly, he slept until 9:30am this morning!! He really did need it.
Given our protocol's schedule, our doctors decided that today (Sunday the 16th) would be Day 1 to start his chemotherapy (he technically received a dose during his lumbar, but they don't count that as part of the Day 1 and forward days).
We've had several medications that we've needed to do either twice or thrice in the day - all of which is agony since he hates the taste of every single one, and he's just tired in general, of medications. :( This evening, he begged me (and when that didn't work, he tried talking to our nurse to see if she'd budge) to "give the bad ones back to the doctor" (referring to the nasty tasting meds he had to take). These are meds we need to give him every day for the next month. It's going to be rough.
When Jon, Paul and Logan arrived - we all headed down to the cafeteria for lunch. He seemed really excited to get out and "eat together as a family". After lunch, I left with Paul and Logan to head home for a bit - I had previously scheduled a massage today, and hadn't canceled it, but we thought it would do me some good given all the hospital couch sleeping I've been doing lately! It felt a bit weird to be heading to a pampered massage while my poor kiddo is in the hospital - so it wasn't as relaxing as they normally are, but I'm glad I got out at least (it was the first time I'd left the hospital since we had been admitted Thursday!).
After I ate dinner with Paul and Logan, I headed back up to the hospital to relieve Jon. We three spent a little time together, walking a bit around the floor before Jon headed back home. The hospital is about a 30 minute drive - so not nearly as close as last week when we were at Good Sam, but it's hard to complain about the distance when there are some families here who have traveled across State lines to receive the fantastic care we are getting here. I know we're receiving some of the best care in the world, for Callum's illness specifically, which DOES help make this entire ordeal a little easier for us to digest.
We're still very overwhelmed by everything, and it's hard for us to even talk about, or plan, what our lives will look like these next few months, and years. I'm sure it'll get better as the days float by, but it's hard to imagine that right now.