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. 

Weekly Check Ups Feb 3 + Feb 7 - Part Two & Good News!!!

Eric has been loving the snow! As previously reported, he got out sledding on Monday after clinic. Tuesday he spent most of the day in bed, but I guess he was just resting up for sledding in the afternoon! This is the snowboard he hurt his knee riding on Sunday, but he got right back on that horse. Thanks to Daimon for letting Eric give it a go! 

Eric hasn't been feeling well enough for school this week. He tends to be quite tired and gets a very slow start in the mornings. He also has been a bit nauseous with some digestive discomfort on and off. However, he has actually feeling quite a bit better than I had anticipated, and better than he was feeling last week, particularly in the afternoons. 

Now to the good news alluded to in the title. If you read Monday's update, you know that Eric's doctor had ordered extra bloodwork because he wanted an indication of how things were going with this new treatment at the half way mark. Monday morning Eric was exactly 2 weeks into the 4 week treatment. The dr called me Wednesday afternoon and I could tell from his voice that he was grinning from ear to ear. The bloodwork is showing a dramatic increase in donor cells and decrease in abnormal cells. He did give me the numbers but I won't share because it isn't a head to head comparison with the previous numbers since they were from a biopsy and this is from a blood draw. I will wait to share until we have the results of the next biopsy which will come at the end of this treatment cycle, now just over a week away. The news comes of course with a lot of caveats, and the doctor says we can be "cautiously optimistic." For me, I believe we have to take the good news where we can get it and this is good news; my heart is jumping for joy to know that it appears this treatment is working. 

Finally, part two, Eric's second clinic day this week. It sure seemed like Monday was a long time ago. I was reminded of how much I prefer Friday appointments - the drive was easy, there was parking at the hospital and the clinic wasn't too busy. Our nurse came and accessed Eric's port quickly and easily. However, we had to wait quite awhile for the results of the bloodwork. Eric's Nurse Practitioner decided to go ahead and order platelets while we waited for the results, since he's needed them twice a week for a couple months now, and it can't hurt to top him up ahead of the weekend. The nurse started the pre-meds, but Eric was feeling really poorly, so when the pre-meds finished she ran Gravol for him as well, before starting the platelets. We did eventually find out that Eric's platelets were 27, which is by no means even close to normal; however, they are the highest Eric's platelets have been in 2 months. We made it out of the hospital and back home mid afternoon. Eric now has a giant Snoralax to nap on in the car and he made good use of it today. Thank you, Evan! 

Unfortunately, after Eric was feeling ok all week, he seems to be feeling quite a bit worse today. Hopefully he'll wake up feeling better in the morning 🤞 

Weekly Check Ups Feb 3 and Feb 7 - Part One

First, Joel is officially a teenager now. A giant teenager. eek! Unfortunately, I got his stomach flu from last week, on his birthday. It was awful. Do not recommend. 

Next, Eric loves snow, and especially, sledding. He has been asking, maybe since September, when is it going to snow?!?! First thing Sunday morning he was asking when can he go to the school for sledding. Chuck took both kids up there for about 1.5 hours (as I was still recovering from the previous very painful day) and they had a blast. Eric did fall and bang his knee and get a huge bruise, but no bleeding so that's a win. Listening to him describe to his doctor on Monday how exactly it happened, after finding out he only had a platelet count of 8 *facepalm*

Finally, off to the hospital Monday morning, after all the snow. I was worried the roads and traffic were going to be awful so we left a little early, but there was very little traffic and we arrived almost 30 min early for our appointment. Since I was worried, I did take Chuck's vehicle as it's our only snow worthy vehicle. I got in it and the check engine light came on! 

It was a bit of a rough day at the clinic, especially since I was already on edge from the snow and the check engine light. I guess since we arrived early, we had to wait quite awhile for our nurse to come and access Eric's port; I hate waiting for this because we can't do anything until we get the bloodwork results, so we need the bloodwork done! Eric's nurse got his port first try no problem, but Eric only gave her a B- telling her she took too long 🤣 

As soon as Eric was accessed he sent me for a ham and cheese croissant and a chocolate milk which he'd been asking for since we arrived at the hospital. I was happy to oblige his craving since he hasn't been eating much at all. His doctor came to have a chat with us right after I returned so I was mindlessly opening Eric's chocolate milk for him while chatting with the doctor. I step back from Eric and the chocolate milk and he picks up the bottle and shakes it. And chocolate milk sprays EVERYWHERE! All over Eric, his iPad, his shirt, the hospital bed, the blanket, EVERYTHING. And Eric is so shocked (and cold!) that he starts crying. With 3 adults there (Grandma joined us for the trip) we quickly cleaned it all up and got Eric a warm blanket and settled him. Turns out I had opened the lid but left it sitting on top of the bottle so Eric thought it was still closed. Ironically, I did the same thing at Christmas with a jar of antipasto and showered myself and my kitchen in it. Clearly, I learned nothing from that incident. 

Anyhow, after that excitement, we had a nice chat with the doctor. Eric is 2 weeks into his 4 week treatment and the doctor wanted an early indication if it might be working so he ordered some additional bloodwork to check. We should get the results of that back Thursday. We also discussed adding an additional "therapy" at this point, now that we know he is "tolerating" the Selinexor okay. This is something that Chuck and I reviewed with the doctor in our in depth chat before starting the current treatment. The plan is to add in the Venetoclax that he was taking before. This is the one that worked to put him in remission last year, and then failed to do so with an increased dose this past fall. The reason these are called "therapies" is (not just to annoy me) because they are not technically chemotherapy. They are targeted therapies working on specific cells, as opposed to chemotherapy, which just kills everything. Given that they still make Eric feel like crap, it seems like splitting hairs to me. The short version of this story is that we discussed adding in the Venetoclax immediately or waiting until we have the results of the additional bloodwork. Since the bloodwork is due back Thursday, I opted to wait until then. 

This is where clinic started to get really painful. As I mentioned, Eric's platelets were 8, so he needed a transfusion. Our nurse came and told us the platelets were ready so she started the pre-meds (since Eric is allergic to platelets he needs pre-meds before every transfusion.) The pre-meds run for 30 min and then the platelets should be upstairs ready to go and they run for an hour. Unfortunately, the pre-meds finished and no one arrived with platelets. FOR AN HOUR. The platelets finally arrived about 5 minutes before I thought we would be leaving the hospital. I find this waiting absolutely excruciating. I try to put on a brave face for Eric, but in a world where everything that Eric has to do, and I have to watch, is difficult, this is one of the more difficult things, perhaps simply because it should be something that can be controlled/eliminated. To add insult to injury, it started snowing in Vancouver shortly after we arrived and never stopped. Mom and I watched it out the window worrying about the roads, while Eric watched it out the window worrying about when he would get to get home for sledding! While we were waiting for the platelets, I went to go make myself a cup of tea to try and find some Zen, and I ran into the Child Life person covering the regular person that day. She gave me an opportunity to vent and also went and got Eric a Lego set. She brought a little one since we'd be only be there another hour and it perked Eric right up. It took him less than a half hour, but was the perfect distraction at the perfect time, and is the cutest little dragon. 

We eventually made it out of the hospital, and despite the time, the traffic wasn't too bad; I'm so glad lots of people chose to stay home. We got home, immediately donned our snow gear, grabbed Joel and headed up to the school for some sledding. We only had about a half hour before Joel had to go out to Code Ninjas, but we had a lot of fun. Eric barely even tested out his new platelets, since he didn't fall, and thankfully I didn't break a hip. Joel nailed hitting a jump with his sled and then landing on his feet. I really wish I had a picture of that because it was pretty impressive. Sadly I have no photos of snow fun because as soon as I took out my phone to take a picture, the battery died.  

In summary, steady on for now, back at clinic on Friday for platelets and results of additional bloodwork.