Hospital Admission Days 6 - 8

So far, so boring! Just the way we like it at the hospital!

Day 6

Eric's white counts are up a little more today, but only a little, and blasts are the same. The Oncologist responsible for the ward this weekend and through next week is one we know and love. She is the Medical Director for Camp Goodtimes and also works closely with Eric's Oncologist. She stopped by this morning and said it is too soon to tell anything. We have to let this new med do its thing for a bit until it settles out and then we might have some idea of what's going on. In the meantime, still doing well, feeling good, electrolytes still within normal range. She hadn't seen his ECG from yesterday so was going to see if she could find it. 

The Child Life Specialist who works on the weekends made waffles this morning in the family lounge. Eric says this is the best weekend ever to be in the hospital - McDonald's yesterday, waffles today and smoothie Sunday tomorrow. Chuck and Joel also came by for a visit today and there was a Pet Therapy Pet Stop in the lobby with 4 dogs. 

Day 7

White blood counts down a bit this morning. Doctor said everything still looking good and nothing planned for the day. WCK (West Coast Kids Cancer Foundation) was in the Family Lounge today blending up fresh smoothies for Smoothie Sunday. I love WCK; their programs hit the mark and make a positive impact on us. No one needs a fresh smoothie more than families trapped in the hospital over the weekend! Ashley, the weekend Child Life Specialist came by and suggested a challenge. Eric would hide 2 scavenger hunts and Ashley and Eric's nurse, Ella, would race to see who could complete theirs first. It was so fun and entertaining. Ashley won, but she bribed Eric with a new Lego set for a hint. 

Eric downloaded a new game - Pal World - on the Xbox and has been so busy playing that he still has an untouched Lego set. At least it keeps him occupied! Meanwhile, I finished a 1000 piece puzzle. 

Day 8

The doctor was in this morning; we'd never met her before but she's quite lovely. Eric's blood counts are pretty similar to yesterday, but blasts down a little bit, which makes me happy. She also said the ECG from Friday looked good. So we're going home today! Eric does have to have a platelet transfusion first and they also have to find his new medicine to send home with us. In the meantime, Simba the Pet Therapy dog came by for a visit. 

Hospital Admission Days 3 - 5

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. 

Hospital Admission Days 1 & 2

I had a lovely weekend away on my Mom's Retreat and the boys had a chill weekend at home. Unfortunately, I only got one night in my own bed before Eric's (planned) hospital admission! A planned admission makes all the difference to how pleasant our hospital stay is. We can prepare with all our comfort items, lego, preferred food and since Eric is not sick we are not on contact precautions (isolation) so we can actually leave the room! 

Day 1

Our appointment wasn't until 1pm so I had the morning to prepare, thank heaven! On an admit day, you have a clinic appointment and wait over there until the inpatient ward is ready for you, usually around 5pm.

We arrived at 1pm and learned that some of the Canucks players were coming in for a visit at 2pm. We were lucky enough to meet and take some photos with Evander Kane, Jake DeBrusk, P.O. Joseph and, of course, Fin! Also, we learned that Jake DeBrusk is into Pokémon and collects the cards still. 

Eric's team wanted him to get an ECG prior to starting the new treatment. Since he wasn't admitted yet, the heart center likes us to come to them. We were going to go before his appointment but then realized we had the whole afternoon to sit around so may as well go then. As soon as the Canucks left, we headed down there. It was quick and we stopped at the coffee shop to get a chocolate milk for Eric. We were back in Eric's room by 3pm and just waiting to go over to the ward. Eric brought an old Ninjago set that used to be Joel's and built that in less than 2 hours. He finished before our room was even ready. 

We moved over to our room about 5pm. It is the first room we were ever in on T8 and, unfortunately, it does not have a fold flat couch bed. So this is what I am sleeping on all week. 

It is about as comfortable as it appears, though I get a sheet and a blanket. I did ask if we could change rooms, and there were two available but one had the same bed and the other is specially designed for patients on airborne precautions. The Charge Nurse said we could have that room, but if someone came in needing it, then they'd have to move us. I agreed and we took our stuff over there, but the way that room is designed, the tv is off center from the patient bed and a little hard to see. Eric was so upset that I asked to move back. An embarrassing trip back to the Charge Nurse, but she was very understanding. 

We settled in and I gave Eric his secret Lego surprise that I had saved for this visit - thank you Grandpa Bob and Grandma Claire! It is Willy Wonka's Chocolate Factory. Eric started building it and we watched the original 1971 Willy Wonka and the Chocolate Factory with Gene Wilder. Eric says its better than the Johnny Depp one. 

Eventually he was ready for bed, way too late, but he was having trouble falling asleep and I guess wiggling his loose tooth with his tongue. At about 10:40 he exclaimed and I bolted out of bed. His tooth was so loose that it had spun around and got stuck at a weird angle (barf!) He was eventually able to pull it out and, of course, it was bleeding pretty badly. We called our nurse and got some tranexamic acid (TXA) on a gauze for Eric to bite down on. Luckily that worked within about 20 minutes. His platelets were low, but since he was going to be inpatient and not bleeding, he hadn't had a transfusion yet. I could have done without this excitement at 11pm, but Eric was pretty chipper about it. 

Day 2 

They do bloodwork along with the 4am vitals, which woke Eric up. As he was going back to sleep he put his hand under his pillow and found the Tooth Fairy had left him a toonie! This morning, Eric had an appointment with his hospital/homebound teacher to set us up school-wise for the week ahead. After that he built Lego and watched movies from about 10am-3pm. During that time he had a platelet transfusion. Around 3pm one of the inpatient Child Life Specialists came by with a "scavenger hunt" for him. They hide laminated pictures around the ward and the kids go find them. Eric enjoys hunting for them and is quite good at it, so they usually try to hide them pretty well. We did the scavenger hunt and then Eric hid one for me to find that he says is quite challenging. We had only just started on it when the Charge Nurse let us know they were going to be able to move us rooms - yay! We headed back to the room to pack up our stuff for the big move across the hall. We were all ready to go, but it took them quite awhile to clean the room we were moving into. We got settled in our new room and I happily grabbed my mattress topper from the car.

We are both super tired after not a lot of sleep last night. Eric started to complain of a headache around 7pm, which could be a side effect, or could just be that his hemoglobin is getting a little low. Other than that, he is feeling great. He just had his third dose this evening - 2 per day, 12 hours apart. We learned that Eric is supposed to take this new medication on an empty stomach, which is a bit of a challenge. So far, we're pretty boring, which is just the way we like it in the hospital!  

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.