The blog title today refers to Gavin’s white blood cell count. This is not much, certainly not normal, but it means that he’s on the way up. It means that we are on track for getting out of hospital for a couple of days later in the week, and that is my sole objective.
It has been a hard week in many ways and I’ve been avoiding writing. I try not to write if my thoughts are too dark, I don’t want to give life to the negative thinking that sometimes swirls in my subconscious, and it’s much harder to keep those thoughts at bay if I am tired or hurt. Another reason that I’ve been avoiding the blog is that I’ve had tendonitis in my forearm all week, which seems to have developed from carrying an especially large bag of laundry around. This has made the most mundane tasks acutely painful, everything from brushing teeth to holding coffee to changing a diaper sent a shooting pain into my wrist and hand. Luckily, acupuncture and painkillers seem to be helping and I think it’s on its way out the door. I am not good at managing pain, certainly no one has ever called me the stoic type. The timing has just been so frustrating, especially when Gavin needs me so much right now and I’ve been having a hard time caring for him properly. He feels sorry for me too, my little sweetheart, and has been commenting, “poor mama, sore arm.”
In other news, Gavin has been struggling through as best he can, but has not had as much energy this round. He has had to have platelets every day of this week, except Monday. He managed to go about 8 or 9 days without a blood transfusion, but was still on a downward trend on Friday, so I expected him to get one, but at 75 he was still considered “ok.” Yesterday morning his Hgb results came back at 94, which was surprising. So much so, that the nurse and I decided we needed a recount. After the results came back from that test we saw a 59, which made more sense, and luckily he got transfused almost right away, so we didn’t waste too much time. The morning would have proceeded better without that lab error though. He did feel much better after the transfusion and this morning wanted to order food, which is always a good sign.
Unfortunately, nausea continues to haunt him and he is having a hard time with that. He has said several times over the last couple of days that he is “no well.” It’s very hard to get accurate descriptions though as to what is happening with him, which I am always very worried about. Any slight change of behaviour sets off the alarms in my head. Last night, he was moaning in his sleep and rolling around quite a bit. He eventually settled down after some Tylenol, but doesn’t usually take pain-killers so I was anxious about that. There are times that he looks dizzy, or just confused, and of course that is worrisome as well. I know the drugs that he has received are taking a terrible toll, but I still maintain hope that our very last round will go well.
Still, despite all of this, he has wanted to play a lot, or at least watch DVDs together and read books. Just recently he has found this new passion for jigsaw puzzles. I’m pleased about it because I’m annoyingly good at puzzles and love doing them. We have four puzzles in the room that are on rotation and have spent an hour or more just working on them, which is pretty good focus for his age. Certainly, at only 26 months he sometimes has a hard time understanding why a certain piece cannot fit, and when he gets tired, takes it personally and yells at me because I’m trying to explain that no amount of jamming them together is going to work. I usually have to say, oh alright, let’s leave that piece there and look at this piece. The distraction works every time and he forgets that he was so angry at me a moment later. He is sometimes impatient and frustrated with us, and resorts to temper tantrums, which is normal for his age anyway, so at least I expect it. I saw a mum in the elevator the other day with her daughter throwing an absolute fit. (Probably about 6 and clearly an oncology patient.) She was just screaming incoherently while her mother rubbed her back saying, I know, I understand, it’s okay, over and over. Adults could not be expected to control themselves with the dangerous cocktail of substances running through their systems, so there’s no way children could.
The room is starting to feel a bit stifling, and commuting from our house has been a pain. Particularly as a couple of days this week I’ve had to rely on Craig to bring clothes. (Storage’s at a premium) Now, Craig’s daily ensemble consists of some kind of T-shirt and jeans, not too hard to throw together an outfit. I am not making any fashion statements but am trying to avoid looking like I mugged a colour-blind hobo on the way to the hospital. I know the women out there can sympathize with me. We are now making rather specific wardrobe requests. The ten pounds I’ve gained lately (Yes, Starbucks, this is your fault.) is not making this process any easier, as I try to calculate which jeans will be snug but wearable, or totally out of the question.
On Wednesday evening my mom stayed with Gavin into the evening and Craig and I had a rare dinner out together. We almost never have the chance to be alone so this was welcome. When we returned to hospital though, Gavin wailed at the thought of me leaving and insisted that I stay the night although it was technically Craig’s night. I agreed to stay, but that had never happened before, he is usually perfectly content to be with Daddy. I took his cue that he needed mama that night for his own reasons, and did not argue but stayed.
If this coming week is anything like the last round we’ll have loads of tests and procedure to get through before we make it home.
p.s. I’ve made a very amateur video of the unit, so you can get a better impression of where we are right now. I did it during nap-time so Gavin is lying down with Daddy in it. Check it out on YouTube: