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.  

Weekly Check Up Monday, October 20 and Friday, October 24

After visiting the hospital through Saturday, Eric and I only had one day, Sunday, free! He did have swimming lessons on that day, but unfortunately, he got a bleeding nose Sunday morning that we had difficulty stopping so he wasn't able to attend. Luckily, his nose did eventually stop bleeding, before I was worried enough to go to the hospital.  

On Monday morning, we headed back into the hospital. Traffic was fine, but the hospital parking lot was bonkers. Luckily we've made friends with the Valet guys, so even though they were full too, they were willing to accommodate us. Conversely, the T8 clinic was practically empty. Eric's nurse had to access his port again after he was just de-accessed on Saturday. His port site is a little bruised and quite sensitive so it was a bit of a rough one for Eric. The platelets were ready pretty quickly so we were in and out in decent time. 

Grandma is here this week with her little puppy, Lily, so Eric spent Tuesday and Wednesday going to school during the day and playing with the puppy the rest of the time. 

Unfortunately, Eric did wake up with a headache on Thursday morning and wasn't able to go to school. His head was hurting all day, which is often a sign of low hemoglobin in Eric so I let his Nurse Clinician know for his appointment the next day. 

Friday was a Pro-D day, but not a day off for Eric because we had a clinic appointment. The clinic was packed and we waited about 20 min for a room, but when we got to the room, it actually hadn't been cleaned yet, so we waited another 10 min for that. On the plus side, his nurse was right there with us waiting for the room to be cleaned so she was able to get him accessed right away. His port site was still tender so it did hurt more than usual, again. Even though the platelets had been pre-ordered, we waited and waited since the blood bank in the hospital didn't have them ready for pick up. We got the results of Eric's bloodwork while we were waiting. His white blood cells are way down adn his neutrophils (germ fighting white blood cells) are non-existent, whish is expected for one week out from the IV chemo. Surprisingly, his hemoglobin count wasn't critical, and he didn't have a headache Friday, so maybe that makes sense. Though, we figured by the time he had his next appointment Wednesday of next week, it would be critical and we didn't want him to suffer waiting for that appointment, so we elected to have the blood transfusion as well. Luckily, the Child Life Specialist was also waiting for us to arrive. She had received a new LEGO shipment was excited to give Eric a Mini Figure Vending Machine set. It is maybe the coolest LEGO set I've seen and kept Eric busy for our very long clinic day. Traffic was not awesome and we didn't make it home until 5:30. 

This week we did also receive the chimerism (DNA) results of the biopsy. Somehow 2 samples were sent and one had 15% donor DNA and one had 19% donor DNA, lending credence to Eric's Oncologist's frequent comment of small changes between biopsies (ex. 10% and 12%) not being statistically significant. This is an increase over his last biopsy, which was about 10% donor DNA. I'm always happy about an increase in donor DNA; however, combined with the increased leukemia blasts, I think his Oncologist would probably say these results are relatively similar (stable) to the last ones. I can only say probably though because we didn't see his Oncologist this week. He was the attending on the inpatient ward for the week so he was very busy with that. We saw a fellow and Eric's Nurse Clinician this week and we will see his regular Oncologist next week. The Nurse Clinician did pass on that his Oncologist is still fighting Health Canada about the clinical trial. We're back to the clinic on Wednesday next week. Fingers crossed Eric can make his swimming lesson tomorrow after missing the last two weeks! 

Chuck, Joel and I all got our flu and covid vaccines this week. Eric can't get vaccinated so it's very important that we do to protect him. Please take 15 minutes and get your vaccinations to protect Eric and others like him! 

Treatment Tuesday, October 14 - Saturday, October 18

We had a lovely, lazy Thanksgiving weekend. The weather was so beautiful! We went to Granny's for turkey dinner and Eric made us set up the Halloween decorations. He loves Halloween! Unfortunately, the crows have made a mess of our lawn, but Eric thinks it adds to the decorations. 

 

Day 1/5: On Tuesday, Eric's appointment wasn't until noon, making for a quicker drive. The first day takes a tad longer since he has to be accessed first, but we were done in under 2 hours and back home before 3pm. Since he got topped up with all the things on Friday, his counts were pretty good. Platelets were falling but okay to wait until Wednesday, as we had planned. Walking down the hall on the way into the clinic, Eric saw a man standing on the roof; the man put his arm out and a hawk flew over and landed on his arm. These are the same birds from  the Birds in Motion demonstration at Grouse Mountain. I think they are at the hospital for pest control. 

Day 2/5: Eric's appointment was slightly earlier on Wednesday since we had planned a platelet transfusion as well. It was at 10:30, so still late enough that traffic should have been good, but apparently there is now construction on Grandview, so it was backed all the way up to the highway exit and took us over an hour to get to the hospital. UGH! Platelets had continued to fall and were down to only 11, so was good timing on the platelet transfusion. Plus Eric was getting a little bleeding from his gums with just regular brushing the last couple days. His Oncologist stopped by for a check up and mentioned that he only had the preliminary report from the biopsy, but it is looking like about 10% leukemia blasts. Clearly not great, but starting treatment this week should help to bring them back down again. It is another reminder that we're going to have to do something different, soon. His doctor said everything is chugging along with setting up the clinical trial and he's hoping it will be ready by the end of this cycle. We are still waiting on the chimerism (DNA) results. 

After the hospital visit, Chuck and I went to donate blood at a pop up blood donation clinic in the tri-cities. It took less than an hour, door to door. You can find an hour to save lives! I already have my next appointment booked for January if anyone wants to join me :)

Day 3/5: Thursday we were hoping for a quick visit and we got it!! Traffic was great both ways and we were at the clinic for just an hour. Since Eric was already accessed, and had platelets the previous day, it should just be the IV anti-nauseant and IV chemo, and both are quick infusions. We'd been there 20 minutes and hadn't seen our nurse yet. When we did see her she was holding a bag of platelets for another patient which I figured was bad news, since the nurses have to sit in the room for the first 15 minutes of blood product transfusions, in case of reaction. However, she was able to send someone else to get Eric started and as soon as the anti-nauseant was done, she walked in with the chemo. It was great timing and we were both happy to head out and get back home. It's the halfway point of the treatment and we're both exhausted. 

Day 4/5: We were hoping for another quick day for Friday. Sadly, the clinic was super busy and we ended up waiting 30 minutes just to get a room. Once our nurse arrived, everything went fairly smoothly, except that Eric's bloodwork wasn't back yet. Even though Eric just had a platelet transfusion on Wednesday, the double whammy of IV and oral chemo will drop his counts. As a result, his Nurse Clinician wanted his counts back before we left, to ensure he didn't need another transfusion. She was able to call the lab and ask if they had a preliminary number and that was high enough that we were allowed to leave. We were at clinic for almost 2 hours. Eric wanted to get home to play video games, but he is doing pretty well. On the other hand, I was so tired that I felt like I was falling asleep on the way to clinic Friday, let alone the way home! 

In the afternoon the Constable that drove Eric to school and was on the Tour de Coast ride, stopped by our house. He brought Eric "beads." The beads are from Camp Goodtimes. Everyone wears their name beads and then you collect and add beads each year for the different camps and activities. This is something the riders do as well. They made Eric beads with his radio call sign Coyote.  

Day 5/5: Clinic isn't open on Saturday so we headed into the inpatient ward. Unfortunately, they were super busy also. They had no rooms available and were waiting for someone to be discharged so the room could be cleaned so that we could use it. We had to wait in the Family Lounge for about 15 min, but then our nurse had the anti nauseant ready to go when we got into the room. We had to wait for a bit for the chemo from pharmacy. Once it was finished, Eric was able to have his port de-accessed and he was so happy. 

Home now and only one day off. We're back to clinic Monday and Friday next week for Eric's regular check ups and platelet transfusions. 

Bone Marrow Biopsy Friday, October 10

We had such a wonderful time at the hockey game on Thursday night. This smile says it all

It's from the Jumbotron. They played a few pictures of Eric that I sent in and spoke a little about his journey and then cut to Eric in the arena and around the arena with everyone cheering and the players banging their sticks on the boards and back to Eric. Before the game, they also took a couple pics of Eric and the family to put on their social media. 

After all that was over, we got to just sit and enjoy the game, and it was a great game!!! Canucks won 5-1! 

Unfortunately, Eric didn't get to bed until 11:30 that night and I had to wake him up at 7am on Friday morning so we could leave for the hospital at 7:30am. He had initially had his biopsy scheduled for Friday and then his Nurse Clinician called and said they had a couple urgent kiddos they had to fit in so they were going to bump us to Tuesday. We were scheduled to be there Tuesday anyhow, so I said sure. Then she called Thursday and said someone had dropped off the list so we could add Eric back on Friday. I told her that I was just worried about how long the list was and if Eric would have to go last because of his cold the previous week. She checked and got back to me letting me know that Eric was off precautions from the previous cold so wouldn't have to go last and also that there were 5 people on Friday and 5 people on Tuesday, so we said we'd go ahead with Friday. I was worried there might be 8 people on the list because I know that is the maximum number of procedures they will do in a day. However, I learned Friday that while 8 is the maximum number of procedures, 4 is the maximum number of bone marrow biopsies and the reason Eric was bumped. Also Friday morning we were thrilled to learn that 2 more people had fallen off the list, so it was only 3 people and one of them had a cold so Eric would be second! He was very happy. On biopsy days he is very focused on the list - how many people on the list, where am I at on the list - because he has to fast for the procedure. 

We arrived at the hospital at 8:30am, a bit short on sleep, but happy to know Eric was second on the list. He got accessed and his nurse called for his platelets. The team had pre-ordered them so he could get the platelets in before he gets poked with a giant needle for the biopsy. They arrived about 9:15 and we were betting if the platelets would finish first or if Eric would get called for procedure first. The platelets run for about an hour and Eric was hoping he'd get called for procedure first, but no such luck. I guessed it would be a toss up, but despite being second on the list, they had got a bit of a late start and the first kiddo didn't go in until 10am. Eric's platelets finished and he was called in about 10:30am. While we were waiting, his Nurse Clinician popped in to say that his hemoglobin had dropped, and while he was still okay where it was, his Oncologist has suggested giving him a blood transfusion so we didn't have to worry about him becoming symptomatic and having a miserable long weekend. So I agreed to that and they were able to do the group and screen and order the blood while he was in procedure. The procedure went smoothly though I marveled at the difference 12 hours makes - from a great time at the hockey game to recovering from sedation at the hospital. Despite being so organized in ordering the blood, it still took a long time for it to be ready and Eric was basically recovered from his sedation by the time it showed up. Luckily, Child Life had given him a large (1000 pc) LEGO set that morning, so he had something to kill the time since it takes 2+ hours to run the red blood cells. 

While the blood was running, Eric's entire team came by. They'd seen him on the Canucks social media and been sent photos of him on the big screen from another Oncologist that was at the game, so they wanted to ask Eric about his experience. Also, do his exam and chat about his bloodwork, of course. Unfortunately, the leukemia blasts circulating in Eric's blood are up. They're not high, but they are definitely there. His Oncologist said it makes sense since he's 2 weeks off treatment so it's good we're starting another round of treatment Tuesday to get them back in check. His platelets were also up a little, so his doctor says it shows that his marrow is making some healthy cells when it is not being suppressed by the chemo. It is a little hard for me to look at a platelet count of 22 (normal is 300ish) as a positive, especially when the blasts are also up from the lack of chemo suppressing them. I expect the biopsy results will also show an increase in blasts. His doctor is still not too worried because the blasts aren't showing a substantial increase and neither are his white blood cells, which would be an indication of the AML taking off. It isn't causing him to change the plan, at any rate. Eric starts another round of treatment Tuesday. It will be 5 days of IV chemo (Tuesday to Saturday) at the outpatient clinic as well as the 28 days of oral chemo starting at the same time. At least this gets us through Halloween with Eric feeling relatively well before we start the experimental treatment, hopefully in 5 or 6 weeks. 

Happy Turkey weekend to everyone!
🦃

Weekly Check Up Monday, Oct 6

Eric continues not to have any cold symptoms after his hospital visit last week, and no bleeding either! 

He had a check up at clinic today and another on Friday, but I wanted to update today since I've got a couple things to share. 

First, our clinic visit today. Eric's platelets were not preordered this time because when he was discharged on Wednesday his platelets were 66, so his NP said she wanted to see his bloodwork before she ordered them. I said that was fine, but that they'd all be dead. Platelets only last a couple of days and Eric's body has essentially zero ability to make new ones. As I had guessed, his platelet count was 8. Luckily red blood cells live a lot longer and Eric's hemoglobin is over 100. Also, exactly a week out from the end of the last cycle and his white blood cells have rebounded a little. They are nowhere near normal, but they're not nothing which is a win. 

Eric's Oncologist stopped by to chat with me today, along with his NP. We haven't seen his Onc in a couple weeks because Eric sees a different Oncologist when he is inpatient like last week and his Oncologist was responsible for the inpatient ward the previous week, so we didn't see him in clinic then either. However, the team had been keeping me up to date on the application to Health Canada - nothing to report! Today he did have an update though. He explained to me that the drug is not approved in Canada, so basically he needs Health Canada approval to bring it into the Country/use it. The drug has been approved in Europe and by the FDA in the US in both children and adults with AML (Acute Myeloid Leukemia) which is not Eric's original diagnosis, but it is related to his original diagnosis and is a secondary diagnosis that Eric has. Specifically, with a specific mutation causing the AML, which is also not the same mutation as Eric has. As a result, Health Canada wasn't super eager to give the go ahead just as is. However, they did reach out to the drug company to get additional information. The medication has been used, with some success, in conditions like Eric's, but there is not a lot of robust data yet. (Duh. Because there are very, very, very few kids on Eric's path.) The Company is willing to give us the drug (yay, that is one hurdle down!) Health Canada is also willing to give the go ahead, but for a clinical trial. His Oncologist says they just do a clinical trial of 1 participant, and they have done it before, but it requires a bunch more steps so will take some time (maybe a month) to organize. There will also be more approvals required to get it set up. 

In the meantime, Eric will have another bone marrow biopsy on Friday and start another round of treatment, more of the same, next week on Tuesday. 

Finally, the exciting news! Eric has been asked to be the Canucks for Kids Star of the Game for the Vancouver Canucks season opener versus Calgary on Thursday! I think it occurs during a commercial break, so those hoping to see it from home are probably out of luck, but I know it means a lot to Eric. He feels recognized and acknowledged for not getting to live like a "normal" kid and for all of the difficulties that he has to face. 

Stay tuned for pics of Eric as the Star of the Game and, in the meantime, here is a picture of Millie from her 4th birthday on Saturday. Saturday was also the 3 year anniversary of the start of this journey. The day that my/Eric's GP called to say his bloodwork was back and it looked like he had leukemia; she told me to pack an overnight bag and go directly to Children's Hospital.