Day 3
At 4am, I flushed our toilet and it wouldn't stop flushing. An industrial toilet flush. It was so loud! I called our nurse and someone came and made it stop, which was heavenly, but in the morning the toilet won't flush at all!
No headache Wednesday morning after having one Tuesday evening before bed. However, Eric's hemoglobin was down a bit in the morning, so he had a blood transfusion. They run blood much slower here than in the clinic. It is safer to run it slower and since the patients aren't going anywhere, there is no rush. He also had an ECG planned for the afternoon to check on his heart. This med (and a bunch of the other ones he takes) is known to cause prolonged QT, the heart muscle taking longer to relax between beats, which can lead to arrythmia. His ECG on Monday prior to starting the medication was almost normal, whereas his previous few show "borderline" QT. Wednesday's ECG looked good.
T8, the Oncology and Hematology floor, has a new Medical Director. She came from Sick Kids in Toronto where they have used this medication a bit more. She stopped by to check in and I asked her about it. They had less than 10 kids on it, but that is more than the ONE here. She said mostly it was a lot of watching for nothing (side effect wise) to occur. So we're hoping that is the case here.
Eric finished his 2025 piece Willy Wonka Lego set Wednesday late afternoon. It took him less than 48 hours. Unfortunately, I haven't taken a picture of that set yet.
Day 4
Eric woke up Thursday morning with a bleeding nose. His platelets weren't even low, for him. He was given oral TXA, intranasal TXA and a nasal spray, but it kept on bleeding. He was also given a platelet transfusion and eventually it did stop bleeding, about when the platelets finished. It bled for 3 hours and 15 minutes. Eric's nurse said it might be a record, but Eric said not for him :( During this time Eric's doctor, different inpatient than his regular oncologist, came to check on him a few times. Eric hasn't been having any issues with the new medication. No side effects so far and his electrolytes in his blood work look good. He has another ECG planned for Friday. As a result, the team would be ok with him going home if things stay the same. However, his white blood cell count is up and his blast count is up. So that could be an indication that the medication is not working and the disease is gaining ground, in which case they would want to keep him longer. They are going to decide in rounds Friday morning after reviewing Friday morning's bloodwork. Eric's regular oncologist will be involved in (lead?) this discussion.
The dietician stopped by later in the day to help give some guidance around what Eric could and couldn't eat in order to take his med on an empty stomach, or, with a low fat meal. He didn't have much trouble with it Thursday morning since he was busy with his nosebleed.
Marvelous Marvin the Pet Therapy dog also came to visit Eric while his nose was bleeding and Eric was able to get a few pats in. Eric finished another Lego set this afternoon - thank you Uncle Jon!
We also got out onto the ward to hunt for some pictures in our scavenger hunts. I was working on a Pokémon one that Eric hid for me and it was hard; he is devious! Eric was working on one that Ken the volunteer hid for him. Ken inspired the scavenger hunt difficulty scale of one to Ken; he is even more devious than Eric!
Day 5
I asked for Eric's blood counts first thing, but they make nothing clear. His white blood cells and blasts are pretty much the same as yesterday. Eric's doctor came by to let us know that they wanted to keep him over the weekend. They need more data to interpret what is happening in his blood. They are also seeing one of his electrolytes creeping up. It is still within the normal range, but is up over the week. Additionally, they are seeing an increased break down of blasts in his blood. This is something they've been watching for on previous admits and could require some treatment to protect Eric's organs. Eric's regular Oncologist also came by to discuss. Eric did have another ECG today also, but I didn't hear anything about the results. I assume that means it is still looking fine, but will ask tomorrow.
Eric is still feeling fine. I am very pleasantly surprised. At the very least I assumed he'd be nauseous. He completed 2 more Lego sets today and has now done 5 sets, one of which was that huge Wonka set, in 4.5 days.
Maggie the Pet Therapy dog came by for a visit today. If you have the pet therapy calendar, it is her and Charlie making up the seven "dwarves" in November. Also today, a former T8 family brought McDonald's in for all the kids here. Eric was quite excited. He was also given a LEGO advent calendar from Child Life.
We're settling in for the weekend and we'll wait and see what comes next.
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