Weekly Check Up - Friday, March 7 (sort of)

"Sort of" because Eric's follow up appointment was scheduled for Friday, but we ended up going in unplanned on Thursday instead. Eric's nose was bleeding Thursday morning basically from when he woke up. It wasn't a lot, but it wouldn't stop. At 9am, after 2 hours of on and off bleeding, I called his Nurse Clinician and she said to come in. In accordance with Murphy's Law, his nose stopped bleeding as soon as we got in the car! 

Perhaps since the visit wasn't planned, I was a little thrown off and we forgot to put Emla on his port site, so we decided to stop at a Shoppers on the way and purchase an Emla patch, rather than waiting at the hospital for an extra hour for his chest to numb. Between the stop on the way, lots of traffic, and me still being in my pjs when I called, we didn't get in until about 10:30am. However, when we got to the hospital they were ready for us! We saw our nurse immediately and she quickly accessed Eric's port. Also when you come in because you're bleeding, they order platelets while you are driving in, so they are ready when you arrive! Usually they would wait for the results of the bloodwork to see if he needed platelets. All in all, despite it being an unplanned visit, it was actually super quick and easy. It was definitely faster than if we had gone for the regularly scheduled appointment Friday where we were supposed to go to the blood lab first. 

Nose bleed aside, Eric isn't feeling too bad this week. He doesn't feel great in the mornings because he hasn't had anti-nauseants overnight and also has to take a bunch of meds so he finds that a bit hard on his tummy. By afternoon, he perks up a bit, but he has been really tired, spending most of his time chilling on the couch. He really isn't eating much - some fruit and milk mostly - and has lost a kg, but seems to rebound once he finishes the treatment cycle. He didn't make it in to school at all this week, beyond about 10 minutes for class photos. Next week is the last week before Spring Break and I am hopeful he'll be able to make it in a little bit next week. We don't have any plans for Spring Break as we continue to just roll with whatever is thrown our way, but hopefully we'll have the opportunity to tackle some simple, fun adventures over the break in between appointments.

This past week, Joel and Eric were sitting on the coffee table playing video games. Eric managed to fall off the table and bang his chest on it (clearly my kid!) Luckily he didn't hit his port side, but he's got quite the spectacular bruise. His whole nipple is purple and he has a bruised line extending out both sides. He came upstairs after falling and said: I have a purple nurple! 

Here's Eric about 6 months old, playing under that same coffee table 💕

Today is day 10 of the cycle, so 5 days post IV chemo and 10 of 28 days into the oral therapy. About a week after the IV chemo is when we see the peak of the effects on his blood counts. We have appointments scheduled for Tuesday and Friday next week to check in at clinic. 

Day 5/5 + Discharge

A quick update to say we made it home mid-afternoon on Sunday. 

Things did go downhill a bit right after I published my last post. Eric was quite nauseous Saturday mid-morning so had some Gravol in addition to his regular anti-nauseant and then ended up lethargic most of the day. Just before bed he got a nose bleed. This does happen often but usually it wraps up pretty quickly. This time it did not. It kept bleeding on and off so Eric was up late. He was fine through the night, but his nose started bleeding again in the morning. He was supposed to get platelets before we left, but they didn't come until around 10am and his nose bled on and off until then. Luckily the nose bleed stopped after the platelets and then he got his last dose of the IV chemo and we headed out. 

At home the hospital hangover is very real with Eric and I as lumps for the rest of the day. Eric will be home for a couple days to rest and then if he is feeling up to it he will go back to school. Eric does continue the oral "therapy" for another 23 days. We're back at clinic on Friday for a check up. 

Eric enjoying some watermelon at the hospital:

Day 4/5 - Saturday, March 1, 2025

What a beautiful day it is outside. This is the view from my "bed." The photo doesn't really do it justice; it's quite beautiful. 

We've spent 3 nights here so far and are doing well. The difference between a stay you have time to prepare for and are "healthy" for versus coming into the ER in the middle of the night with a fever and being on precautions (isolation) is night and day. We have all of our comfort items (lego and stuffies for Eric; a mattress topper and towel for me) and we are allowed to leave our room to fetch things, do Pokémon scavenger hunts, or just walk around. Eric has had 3 days of the IV chemo and 3 days of the oral "therapy" and is still feeling pretty well. He takes an anti-nauseant 3x a day, and so far it is working to keep him comfortable. 

Ever since Eric's transplant, we have the same doctor on the inpatient ward picking him up whenever we're in. She's wonderful and we really like the consistency since she knows Eric and his history well. She's off today, but we saw her yesterday and she's back tomorrow. Eric is inpatient in order to keep an eye on his bloodwork because the breakdown of blast cells can cause an imbalance in electrolytes. She said everything is looking good with his bloodwork so far and he's feeling fine, so we are on track to go home tomorrow (Sunday) after his last dose of IV chemo and a platelet transfusion. Yay!  

Eric's been keeping busy with Lego. He built a small Lego set upon our arrival and then did 2 big sets over the next 2 days. Thank you to Michelle and Evelyn + the Harris Family for these awesome Lego sets! 

 

Thank you also to everyone who has checked in on us and to Kristy and Jill for dropping off food, to Auntie Jenny for visiting the hospital and bringing snacks, and to the Clark family, Shekhtman family, Logan family, Michelle, and the Baker Drive Elementary Community for the Skip and Door Dash gift cards. We're able to eat well this visit, which is extra important this time since the one thing that Eric liked to eat at the hospital - the grilled cheese sandwich - they've ruined by making with real cheese ;) 

Day 1/5 - Feb 26, 2025

As planned, Eric was admitted to hospital this afternoon. It was one of our smoothest admissions ever. Not that it's usually challenging to be admitted, just slow. Eric's all tucked into his comfy bed and has started on his Lego. He has already had his first dose of the IV chemo and is right now taking his first dose of the oral therapy, not the most recent one (Selinexor), but the previous one (Venetoclax).  

When we saw Eric's doctor this afternoon, we did get some additional results from his bone marrow biopsy last week. I can't categorize it as good or bad, in light of where we thought we were headed 2 weeks ago (the good news). The donor cells are 21%. Obviously, this is not as good as the 75% we had heard 2 weeks ago from the same test completed on peripheral blood, versus bone marrow. However, it is higher than it was at his last bone marrow biopsy on Jan 6 where it was 11% and, as his dr reminds me, he still has donor cells and that is worth celebrating. Right now the most urgent problem is the blasts I mentioned a few days ago, which is what we're attempting to tackle with this current hospitalization and round of treatment. For now, we focus on that, and worry about next steps later. 

Prior to attending the hospital this afternoon, Eric was able to go on his class swimming field trip. He was SO HAPPY! He played in the wave pool with friends for a bit, took a spin on the waterslide, spent a lot of time on the diving boards and finished up on the rope swing. We showed everyone at the hospital the pictures of him jumping off the diving board and they were all suitably impressed with him jumping fearlessly from 2m. 

 

Quick Update

Thank you to everyone for your well wishes. Eric had his check up today, and was allowed to leave, after a platelet transfusion. We are home! He got to go to swimming lessons this evening. He'll go to school tomorrow and his swimming field trip Wednesday morning before heading back to the hospital to be admitted Wednesday.  

Bone Marrow Biopsy Wednesday, Feb 20 + Bad News

We enjoyed a lovely Family Day long weekend. We went to see the Dog Man movie. Eric gave it an 8/10, but just meh for the rest of us. It had a few funny parts, but is definitely suited to a younger crowd. After the movie, the kids made me play Catan. I've been avoiding this for year, but they finally got me. It actually was pretty fun, and not what I had expected at all. Eric got lots of swimming lessons in this weekend because he has a couple make up classes and I figure we should load him up when he's feeling good. He sure loves swimming and demonstrated a pretty impressive breast stroke for his first time putting the arms and legs together. 

On Tuesday Eric went to school for the first time in a month! It was amazing for both of us. I got out to walk the dog in Mundy Park and got some much needed time alone. Eric spent much of the evening talking about school and his friends. 

On Wednesday, Eric had a scheduled Bone Marrow Biopsy. This is done often at the end of a treatment cycle to get a good check on how things have changed as a result of the treatment. They like us in the clinic early on these days so our appointment was 8am so traffic was pretty good that early and parking was amazing! We left at 7am and arrived at clinic before it was even open! We were only there a few minutes before they opened and we got to chat with all the staff on their way in to work. Eric's big question on biopsy day is always: how many people are on the (procedure) list and where am I on the list? They make the order in the morning once everyone arrives and they know if everyone is sick, etc. Eric's nurse thought he was #4 on the list and I estimated that would be about 11am and he was really upset. He loves the going to sleep part of the biopsy (apparently not that weird according to the nurses) but he hates the fasting part. Then we found out he was 3rd so I estimated 10:30, but they came to get him at 10:15!!! In the time between our arrival and his biopsy, Eric's port was accessed (easily!) and bloodwork drawn. The bloodwork came back with both his platelets and hemoglobin a little on the low side, so Eric's doctor recommended transfusions for both. Everything went smoothly but it does make for a very, very long day with a biopsy and 2 transfusions. We got out at 3:30pm, just in time for rush hour :( It was pouring rain so Eric put Snowball, his stuffie, in his jacket with his face peeking out under Eric's chin. I tried to take a picture, but Eric was a little grumpy after the sedation and a very long day. With traffic we didn't get home until 4:40pm. We were at the clinic 7.5 hours and 9h 40m door to door. It was such a long day and we were both exhausted, but not nearly as frustrating as those shorter days where we have to wait, wait, wait. 

Thursday morning, Eric woke up pretty sore from his biopsy yesterday and elected to stay home from school to rest. 

As I've mentioned in previous blog posts, the biopsy results come in 3 parts. First, we have just looking under the microscope to get a sense of how healthy the marrow is and what the cells look like. That result comes quite quickly, but not does not provide any quantifiable data. The other results take longer, but they tell us the % of abnormal cells and the % of donor cells in the marrow. We won't have those results until the end of next week probably. However, Eric's doctor needs to plan for next steps and get approval from BC Cancer for another round, so we set up a zoom call for Thursday afternoon to discuss the initial results and next steps. 

Eric's doctor started the call just by saying it isn't good news. While this initial report doesn't technically quantify results, they can count what they are seeing and estimate. They're seeing 80-90% of the abnormal cells that mark Eric's disease, and even more concerning is they are now seeing about 10% blasts. These are leukemia cells. This means that things are looking worse after this round of treatment, and more similar to the situation back in October.  The doctor says we have to get these under control immediately. His recommendation is for Eric to be admitted to hospital for a round (5 days) of the IV chemo he has done previously, and to combine that with a round (28 days) of the oral treatment that he was taking previous to this last cycle. We switched from this treatment because it only maintaining his abnormal cells where they were at and not showing an improvement. However, it did initially work to break down the blasts and maintaining is a heck of a lot better than worsening. Eric has a class field trip on Wednesday morning to the swimming pool which he is really hoping to attend. So the plan is to be admitted and start the treatment Wednesday afternoon. However, his doctor has asked that we attend the clinic on Monday for a check up and has advised that if things look worse from the bloodwork, he will admit Eric on Monday instead. He is certainly supportive of Wednesday if it is safe, but did suggest I pack a bag for Monday. 

Hopefully, Eric will only have to be in hospital for 5 days and hopefully this treatment helps get him back on track. With news like this, and particularly the hospitalization, people always ask how they can help. Honestly, your thoughts and prayers, and check ins on how we are doing, are really and truly appreciated. If anyone wanted to do more than that, Eric loves Lego (if you've been following my blog, this is no surprise) and it keeps him entertained at the hospital. He loves Ninjago, Dreamzz and Harry Potter sets as well as Technic sets. He does have a Lego Wish List on Amazon: Eric's Amazon Wish List Additionally, while Eric gets "room service" at the hospital, I do not, and Eric isn't a fan of the hospital food anyhow. We end up getting Door Dash which is really expensive, so Door Dash gift cards are appreciated. Finally, our Go Fund Me is still open and can be found here Eric Fights Big

I don't have any photos from this week, since Eric was grumpy and wouldn't let me take a pic and him and Snowball, and Chuck did try and take a family selfie of our Catan game, but I'm not sure that worked well. Instead, I have a throwback. The picture is a bit raw and not the kind of photo that I have shared much of. However, it was International Childhood Cancer Day last weekend and I shared the photo on my Instagram and it seemed to be well received. This is Eric in hospital in February 2023, a little over a month after his Bone Marrow Transplant. He has his CVC line on the outside of his body and an NG tube for nutrition, but his counts were high enough that he was allowed to have a visit from one of the Pet Therapy dogs. This is either Maggie or Charley (they look the same to me) and Eric was, and still is, happy to spare a smile and a pat for a dog. 

 

Weekly Check Ups Feb 10 & Feb 14

At clinic on Friday, I had lobbied for a check up later this week, but was unsuccessful. Eric's sodium dropped a little on Friday so his doctor wanted to check it again on Monday before he took his next dose of Selinexor. We did have a lovely, relaxing weekend in between the two appointments though. We had some nice family time for the Super Bowl, not that any of us are interested in the football, except maybe Chuck, but we had snacks! Here's a pic of Eric with his own personal Super Bowl snacks. 

On Monday, mid-morning, we headed into clinic and traffic wasn't too bad. For the first time in more than 2 months, we actually went to the blood lab first. We didn't anticipate Eric would need a transfusion since he'd had a platelet transfusion Friday, so we planned for a quick visit. Unfortunately, the lab had other plans. The line up to check in was to the door and the waiting room was packed. Eric will not sit in the waiting room like that; it is so full, mostly with people not wearing masks. We were told the wait would be 30-40 minutes, but it was a full hour until we were called in. We put a little kids chair out in the hallway for Eric so he would be more comfortable and he just watched something on his iPad, but it was pretty frustrating. We headed over to the Oncology Clinic and his doctor came in fairly quickly after we arrived. Eric's Nurse Practitioner did the exam while I spoke with his Oncologist and we got out of clinic so fast that Eric actually said "we get to leave already?"  The doctor came with pretty decent news; no transfusions were required and platelets were 34. Again, not normal by any means, but so much higher than they've been in months. Additionally his sodium had bumped back up a couple points, so he was safe to take his Monday dose. 

This is Eric's last week of this cycle of treatment, so he will have a bone marrow biopsy Wednesday next week. However, they felt that leaving Eric from Monday to the following Wednesday, 9 days, was too long, since he has been having transfusions twice a week for months. They asked if we wanted to come into the hospital on Friday for bloodwork at the lab and a check up at clinic or go to a local LifeLabs on Thursday morning. We initially chose just to go to the hospital Friday, thinking that we can't get an appointment at LifeLabs on Thursday morning so it will be a wait anyhow, and then we might have to come in Friday anyway if Eric needs a transfusion. However, a friend in Vancouver told me its a pro-d day there on Friday and we've found that makes the hospital - parking, blood lab, etc - very busy. So we decided to go to LifeLabs. 

Thursday morning I watched the wait times online and we made a break for it and got so lucky! We were in and out in 10 minutes flat. It wasn't until late afternoon that our team got the results. Eric's Nurse Clinician called to say that his platelets were 21 and they thought it was probably a good idea to top him up before the long weekend. We went to clinic for 10am and both traffic and parking were great; I love Fridays. Since we knew the day before we were coming in specifically for platelets, the doctor ordered them before we arrived and our nurse got started right away. We told her that Eric had hoped to go to his class Valentine's party that afternoon. She looked at the clock and said hmmm, no pressure... Everything went smoothly, but it does take a bit of time to do the access, make the lines, make the pre-meds and get the platelets upstairs. We ended up at the school later than we had hoped; however, Eric still got an hour of his Valentine's party. He hasn't been at school in more than 3 weeks so that was a big win. Unfortunately, Eric's platelets were only 15 on Friday. I had hoped they'd be higher, but his doctor reminded me that he'd been getting transfusions twice a week, and this had been a full week since his last transfusion (and the platelets weren't <5) so that is an improvement. 

Eric ordered himself a new Lego set on Thursday with his Christmas money. While at clinic on Friday he was gifted a smallish set and had time to finish 3 of 4 bags. Additionally he had a set he'd been given awhile ago, but hadn't been feeling well enough to finish. With a new Lego set arriving imminently, he was motivated to finish up those other 2 sets Friday evening. Then he spent all day Saturday building his new set. 

Eric is done this cycle of treatment now. He has a biopsy scheduled for Wednesday to check in on what's happening in his marrow. Since he'll get a little break from treatment while we wait on results, I expect he'll be feeling much better and able to go to school. I hope. Fingers crossed.