Eric and I loved the weekend to ourselves. It was so quiet and relaxing! Eric had a blast at the birthday party on Saturday and wanted to stay longer. This is Eric with the slime he got at the birthday party.
Unfortunately, the following day he only made it through about 20 minutes of his 30 minute swimming lesson. 15 minutes in he called me over to let me know he had a headache and 5 minutes after that he couldn't go on. His hemoglobin was down on Friday so we assume he needs a blood transfusion, but I didn't expect the headache so quickly. I guess the extra draw on oxygen from swimming was just too hard on his poor body. He came home, had a bath, put on pjs and was okay after that. We spent most of the weekend relaxing; Eric lots of time on his iPad of course, and I read 2 books! Millie got lots of cuddles.
Eric's head was fine the next few days for school on Monday and then Remembrance Day on Tuesday. Wednesday we hit the hospital, where his Oncologist came immediately to tell us that he had been granted access to the medication from the drug company. Eric's nurse hadn't even made it in the room yet! His nurse did arrive after that and Eric got accessed. The platelets had been preordered and were ready to go. While they were running, his blood counts came back and his hemoglobin was 80, which is Eric's number. Typically at 80 he will become symptomatic with headaches. Red blood cells were ordered and ready just as the platelets finished. The timing was pretty amazing, but 2 transfusions always makes for a long day. The lovely Kristina, Child Life, came through with a cool gem LEGO set for Eric. We were there about 4 and 3/4 hours and left in peak rush hour. The GPS said we'd be an hour and 10 to get home, but traffic was building as we hit the road and it ended up taking us more than 1.5 hours to get home, twice as long as it took to get there. We got home at dinner time, exhausted, and I had 2 kids to feed and no plan, plus Chuck was at work until about 7:30. I made scrambled eggs and toast. We ate dinner and I put on my pjs and turned on the tv for some mindless veg'ing for the evening.
With Eric topped up with blood, he headed to school on Thursday morning and then to a make up swim class on Thursday evening. His lessons are usually at a small home pool, but for this make up lesson we tried a new location with a still private, but longer 25m pool. Eric thought he might struggle with the longer length but had no trouble at all.
Eric doesn't go to school on Fridays, but he met with his online teacher Friday morning and then we had some appointments and errands, including a hair cut for Eric. His hair is so thin we don't get it cut often but it was bothering the back of his neck and hanging over his ears and into his eyes so he was begging for a hair cut. Finally, to cap off our week, we went to the Coquitlam Express hockey game. The players had come to Eric's school for a presentation and all the kids were offered a free ticket to the game. Eric wanted to go so we booked the whole family and Eric got to hang out with some friends from school and cheer on the Express. It was a great game and the Express won 7-4! Here is Eric enjoying his sour gummy worms at the game.
We have a busy weekend ahead with Joel taking the babysitters course today and tomorrow Eric has swimming lessons in the morning and then we go to a Starlight event called Trick or Suite.
About the new treatment. Now that we know that we have access, the plan is to sit down next week and go through the treatment plan with Eric's Oncologist. In the meantime, what I do know is that it is an oral treatment, so Eric will be able to take it at home. However, he does need to be inpatient initially for monitoring. As with all of these medications, the list of side effects is like those ads you see on tv. I do not yet know how long the inpatient stay will be, but am assuming at least a week. We have our admission scheduled for Monday, November 24. The medication is called Revumenib/Revuforj and is a menin inhibitor. It is different from any medication that we have tried before. The purpose of all of the other ones, since transplant, have been to boost donor cells, whereas this is a targeted therapy to address the specific cell mutation.
Eric's appointments for next week are scheduled for Monday and Thursday. Monday is a biopsy as it is one week since he finished his last round of treatment.
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