Weekly Check Up Monday, Nov 17 and Thurs, Nov 20

We had a great time at Starlight's Trick or Suite event on Sunday. It was a fun way to cap off our busy weekend. 

Monday morning Eric and I had to leave early for the hospital because he had a biopsy scheduled and they like to get us in early for that. Eric was fasting and likes to ask everyone how many people are on the list and what number he is on the list and lament that he is now 10 years old so it takes longer to get to him (they go youngest to oldest.) He didn't get in until about 11:15am, but on the plus side, he got his full unit of platelets prior to the biopsy. When his nurse was getting ready for his bloodwork, I saw 2 of the vials were different. They have a red and green top which is special for the split chimerism. When I saw them I realized that I hadn't actually received the results from the previous split chimerism test. We saw Eric's NP that day and she pulled up the report for me. It shows that all of the donor DNA is in the lymphoid cells and virtually none in the myeloid cells. This is the same as it's been for quite awhile. With the late biopsy, Eric didn't get back to the room until about noon and then needed about an hour to recover from the sedation before he felt steady enough to head out. 

Eric went to school Tuesday. Wednesday morning Eric was invited to visit a firehall in Burnaby. One of the Cops for Cancer riders is a fire fighter in Burnaby and his sister is actually one of Eric's nurses at the clinic. He arranged for a visit at Burnaby's brand new fire hall No 4. Eric got to ride in the passenger seat of the fire truck, turn on the lights and sirens and spray the fire hose. Eric's favourite was the pole that he went down 3x! A close second was when they thought they were just draining the water from the hose to roll it up, but it actually hadn't shut off properly; it went a little rogue and sprayed us! 

Thursday morning Eric's class had an ice skating field trip. He really enjoys ice skating and was excited to go. He spent the entire hour on the ice and didn't come off at all complaining about sore feet or anything. 

We went straight from the ice rink to clinic. Normally we would go Friday this week, but clinic is closed tomorrow for a training session, so they asked us to come Thursday instead. Eric said "I am NOT missing my field trip" and, of course, they are happy to accommodate him whenever they can. While Eric got his platelet transfusion, I spent some time talking to his Oncologist about the upcoming treatment. We chatted for awhile and he gave me some papers to browse and then I will have to sign my consent for the treatment on Monday. There is the potential for some pretty serious side effects which is why Eric will be inpatient for monitoring. He will be admitted on Monday and if everything goes well, he will be there for a week or two. However, if things go sideways, it could easily be a month. Even if released after a week or two, we will have to go into the clinic twice a week for about a month for continued monitoring. If things go as planned, Eric will take the oral med twice a day for 30 days and then have a bone marrow biopsy for a check in. At that point, there is no "break" between cycles like we are used to; he will continue taking for another 30 days and then have another check in. 

Eric has another make up swimming lesson Thursday night - such a busy day for him - and then swimming again on Sunday before he has to take a (hopefully) short break. 

Eric doesn't go to school on Fridays, and having got his clinic visit out of the way Thursday, he has a completely free day on Friday. He tells me he is planning to play Minecraft Dungeons all day long! On Friday afternoon, I am going away for the weekend on a Mom's Retreat organized by the Patient Parent Advocate at the hospital, and supported by Balding for Dollars and Power to Be. I am really looking forward to it! 

Weekly Check Up Wednesday, November 12

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. 

Weekly Check Ups Monday, Nov 3 and Friday, Nov 7

We had a pretty low key weekend. Eric had his swimming lesson on Sunday and that was about it. They worked on flip turns and he's gotten really good at them!

Eric's Monday appointment wasn't until 11am so Eric and I were having a chill morning when I received an email from Eric's Nurse Clinician. She was asking if we could stop at the Heart Center on the way in for an ECG because Eric's doctor had received Health Canada approval for the new med following his recent appeal. Now he needs to go back to the company, who initially approved the access under the premise of a clinical trial, to see if they will now provide the medication under the new premise. In order to submit the request, he needed an ECG within 10 days. Luckily ECGs are quick and easy and can be done as walk in. 

Eric's platelets had been pre ordered and were ready to go as soon as he was accessed. We were on track to be pretty fast, but luckily still had a chance to chat with Eric's Oncologist. He wants to wait until the drug company has approved and we have the medication on site before coming up with a concrete plan. However, he confirmed that we'd want to start 1-2 weeks after the current cycle ends and after another biopsy. He also reminded me that we will need to be inpatient for at least part of the time; though we really haven't talked about how long that might be for. 

Health Canada approving this med is, of course, very good news. However, I'm finding myself a bit focused on all the other stuff that goes along with it - that it will likely make Eric ill, that we have to be inpatient, and all the unknowns.  

We had Eric's bedside nurse plus his Nurse Clinician, Nurse Practitioner and Oncologist all visit so they were all able to look at his weird bruises. They were only concerned if they were continuing to bleed under the skin and/or if there was swelling at the site of the bruises. There wasn't, so all good. Eric and I had assumed his platelets would be "less than 5" with all the bruising, but they weren't. They were 6!

We were ready to go about 2 hours after arrival, except I was having some challenges with pharmacy. They were all of my own creation; I had called the BCCH pharmacy for a refill, but then forgot I did it and asked our nurse clinician to coordinate a refill. I had to go down to pharmacy and explain what I'd done and then see if they had any meds ready for us. They had initially said they wouldn't be ready until 2pm, but the squeaky wheel gets the grease, and they had them ready for us a little after 1pm when we finished up at clinic. A nice quick visit and traffic was a breeze!

Eric has been attending school fairly regularly, but came home after recess on Thursday because he was just so tired. It is near the end of this cycle so no surprise it is taking a toll. 

Back to clinic for another platelet transfusion on Friday. Eric's Oncologist told us on Monday that he would be away Friday, but that if he had any information from the drug company he would let us know. Unfortunately, he didn't have any. The Nurse Clinician said he reached out to them before he left to give them a little nudge. Hopefully by the time we're back on Wednesday, after the holiday here Tuesday, there will be an update. We saw our Nurse Practitioner for a quick exam. Eric doesn't seem to have any new bruises, but his old ones aren't healing either and his platelets were "less than 5" this time. His hemoglobin took a bit of a dive since Monday's appointment, but not low enough yet to need a transfusion. We were just over 2 hours. With the platelets pre-ordered we seem to have shaved an hour off our average appointment time. 

Eric has been quite tired since Thursday and slept for 12.5 hours last night!  Chuck and Joel are gone to the Sunshine Coast for the weekend, but Eric and I are staying home, with Millie. Eric has a birthday party and swimming lessons to attend and other than that, I think we'll spend the weekend resting up. 

Weekly Check Up Wednesday, October 29

Eric made it to his swimming lesson on Sunday. Finally! It's been a few weeks and he really enjoyed being back in the pool. 

This week we only had to go to the hospital on Wednesday. Even though we are there all the time, this did feel like a bit of a reprieve after being there 5 days in a row, only getting one day off, and then in twice last week. Eric's port site is still pretty sensitive and now he's got a new and weird looking bruise over it, along with another weird one at his waist/hip and a huge one on his wrist. The bruises aren't new for him - he's taken to calling himself an old banana - but these ones are either odd or huge. We will be showing his doctor on Monday for sure, but I assume they are "normal" in the circumstances. 

Eric got his access, bloodwork and platelet transfusion in decent time on Wednesday. I did have a chance to have a good chat with his Oncologist. 

The full biopsy results are about 10% leukemia blasts, 78% of the abnormal cells and somewhere between 15-20% donor DNA. Overall, it is a small improvement, but improvement is better than the alternative. The leukemia blasts are higher (not an improvement) which had me a little confused, but his doctor explained that the abnormal cells are making the leukemia blasts and they can do that whether there are 78%, 88% or 28% of them. It is from the break between cycles, so not actively suppressing them.   

I also was able to ask him about Health Canada and the clinical trial for this new med. Clinical trials require a lot of effort and energy to set up. They were working on that, but in the meantime, the FDA approved this medication for additional uses just a week ago. As a result, he has appealed Health Canada's decision. With the additional approval, he believes they should be able to get Health Canada approval without having to set up the trial. He expects to have a response soon. 

Eric has been counting down to Halloween for over a month and it finally arrived on Friday! Thursday after school he carved his pumpkin. he used a stencil, but did it all himself for the first time. Well, except for scooping out the guts. Neither of my kids will scoop the guts!

Eric doesn't usually go to school on Friday, but he was excited to go this week for the costume parade, pumpkin contest and classroom movie/party. He was also super excited to go trick or treating, despite the torrential downpour. The big kids went off on their own, while Eric and his friends followed the route they had laid out with all the parents tagging along behind. After about an hour, we ran into the big kids headed home. They were soaking wet and had enough. Eric and his bestie made it another 15 min before turning around. They traded candies with the big kids, who were in the basement eating candy and watching tv. When Eric's friend headed home, Eric put on his pjs and had some hot chocolate to warm up. 

After making us put up so many Halloween decorations, Eric has already tried to get out of cleaning them up. Nice try kid! 

Back to clinic Monday and Friday next week.