Weekly Check Up & Biopsy Wednesday, April 2

Hello April! It's Eric's month on the calendar. 

Monday was back to school after Spring Break, except Eric didn't sleep well Sunday night and was too tired to go to school Monday. Joel went and Eric stayed home and I finished up my Spring Break chores/Spring purge everything from the house! Eric did go to swim class Monday evening and everything was great, until the class ended and Eric said he felt like he was going to throw up, and then vomited in the bushes. He finished his treatment a week ago and hasn't been feeling nauseous so hasn't been taking his anti nauseant, but maybe he needs it for swimming. No idea what is happening with this random vomiting. Then on Tuesday he planned to go to school, but his nose started bleeding in the morning and would not stop! Last time this happened, we were able to just move our clinic appointment forward a day, but since his appointment this week included a biopsy that he had to fast for, that wasn't an option. If we went to the clinic on Tuesday, we were still going to have to go back Wednesday. Luckily we had some medicine, tranexamic acid, that helps lessen bleeding. Eric took a dose orally (unhappily; they are huge tablets!) and I crushed some and put it on gauze and stuck it up his nose. It worked! His nose stopped bleeding and he got to go to school at about 9:30 and his nose didn't bleed again the rest of the day. What a start to the week, but sadly, vomiting and nose bleeds are two of the things that have become routine in our world. 

Since Eric is needing a platelet transfusion every 5ish days, I've been trying to schedule clinic Monday/Tuesday and Friday one week and then Wednesday the following week. At least that way every second week we only have to go to clinic once in the week! It's such a small thing, but so necessary. So this week, Eric was scheduled for Wednesday. Also, since it was just over a week since he finished the last cycle of treatment, he was scheduled for a Bone Marrow Biopsy. This was his 17th bone marrow biopsy since October 2022 when this all started. Initially, the nurse would feel his hips to determine the correct location to place the Emla (numbing cream) in advance of the procedure, but they no longer need to. You can see the location after this many biopsies. There is a permanent mark on his back about the size of a quarter. 

Due to the biopsy, we had an early appointment. It was 8:30am so we had to leave the house at 7:30am and I had to wake Eric up at 7am. He has to fast, so no food after bedtime the night before; he is allowed water or apple juice in the morning until we arrive at clinic. Traffic was ok for rush hour and it took about an hour to get there. We checked in, got our room and then waited, and waited, and waited. Eventually our nurse showed up and it turned out that she had another kid having a procedure that morning and it took awhile to do his access because he was quite young. Meanwhile, Eric was asking anyone who would listen, what number he is on the list. We found out there were 7 people on the procedure list that day, which is a lot; they will only do a maximum of 8 in a day. However, we didn't know where Eric was on the list because they don't make the list until everyone checks in because someone might have a cold which would mean they'd have to go last. Other than that, they generally go from youngest to oldest. 

So Eric's nurse arrived, did the port access and did his bloodwork. By now it is past 9:30. Unfortunately, when I went to check with the head nurse (because Eric would not stop asking) I learned that they wanted Eric's platelet count before placing him on the list. Then they decided to just order platelets right then and get started while we waited for the results of the blood test. Then, because Eric is allergic to platelets, the procedure team didn't really want him in procedure while receiving platelets, just in case he had a reaction. So the platelets had to be finished before he could have his procedure. We never did find out his place on the list, but they came to get him at almost 11:30am. Eric was, understandably, a complete wreck. He was so hungry and frustrated. He was alternately crying, and yelling that he hated the hospital, it wasn't fair and he was going to leave. All the things he goes through at the hospital and this sort of thing seems unnecessarily cruel. My mama heart was breaking for my poor boy.  

The procedure went just fine and they brought Eric back to the room around noon. He does usually wake up from the sedation pretty quickly, but I think they might have brought him back a little early because he was a little confused and also really, really funny! He wasn't sure how I got there or where he was and when I said he was back in his room, he thought we were at home. His social worker had stopped by and he was giving her a good chuckle. He had a pb and j sandwich and a chocolate milk and he started to feel much better. Although, just before he had gone in to procedure, his bloodwork results finally came back. His platelets weren't as low as I thought they would be after the nose bleed the previous day, but his hemoglobin was lower than I expected, and low enough that he needed a blood transfusion. 

It took forever for the blood to arrive upstairs and his nurse to be available to get it started. Luckily, Kristina from Child Life brought him a cute Lego panda set to keep him entertained for our unexpectedly long day. We finally got out of there around 3:30, just in time for rush hour. It took over an hour to get home so we arrived at about 4:40pm, more than 9 hours after we left, both of us absolutely exhausted. On the plus side, Eric is all loaded up on products, having received both blood and platelet transfusions, and should be good to go the next couple days! Unfortunately, he woke up this morning with his back quite sore at the biopsy site and elected not to go to school today (Thursday). 

Appointments Monday and Friday next week. Biopsy results will trickle in but probably 1.5 weeks until we get the full results with the chimerism (donor DNA) info. 

Weekly Check Up - Monday, March 24 and Friday, March 28

We had a lovely few days at Halfmoon Bay. We got 2 nice days, though it rained overnight and then was a torrential downpour on Sunday all day. Unfortunately, Friday evening Eric started complaining of a really bad headache. I gave him some of his prescription painkiller, but it didn't seem to help at all and then he threw up. Luckily, he woke up Saturday morning feeling like a million bucks! However, the same thing happened again Saturday night. Very, very unfortunately, neither of us were well prepared and Eric had to change his pjs while i changed the sheets and cleaned the carpet and change my own pants 😭 Again, he woke up Sunday morning feeling like a million bucks and we haven't had a repeat since. 

We got home from Halfmoon Bay on Sunday night to a power outage. The power was out from 1:15pm to 9pm and we arrived home about 7:20pm. The kids seemed to think it was pretty fun, but I unpacked with a headlamp! 

Early Monday morning we headed for clinic. Traffic in the city wasn't too bad, but there was a stalled car in the middle of the highway so it was pretty slow going most of the way along the highway. We arrived right about 9am and his nurse had his port accessed and was leaving the room with the blood by 9:21. It did take an hour to get the results which is longer than usual. Eric's nurse clinician came in the room and asked if we wanted to guess his platelet count. We do this sometimes just to keep hospital visits interesting. I guessed 12, based on absolutely nothing, and Eric said "I'm going to be optimistic...I will guess 13." Since when is 13 optimistic??? Grandma asked what her platelets would be and I said probably around 300ish. Anyhow, I was right, bang on 12! Apparently there is no prize for being so smart :( Eric got his platelet transfusion and we headed out, arriving home about 1:30pm and then we had a couple hours to chill before heading out to swim lessons. No vomit at swim lessons this week!   

I wrote the beginning of this update after the Monday appointment, intending to finish it after the Friday appointment on Friday evening or Saturday morning. However, after the Friday appointment I crashed hard: had a big nap and ordered take out for dinner. When I woke up Saturday morning I realized it was the last weekend of Spring Break and we (I) hadn't finished cleaning the kids bedrooms yet, so we (I) spent the weekend doing that. Only now on Monday morning did I realize that I had forgotten to finish my blog as planned. 

On Thursday, Eric's nurse clinician reached out to me and asked if we would move our Friday appointment to 8 or 8:30 instead of the 9:30 we had booked since clinic was anticipating being very busy around 9 am with lots of possible transfusions. Eric flat out refused to go into clinic any earlier. We usually try to be accommodating; though I think I might usually agree without asking Eric and this time I asked Eric. To be fair to Eric, an 8am appointment means leaving here at 7am, during Spring Break! When we declined to change our appointment they warned us there may not be a room available for us when we arrived so we might have to wait. Traffic was great and we arrived about 15 min early and then waited maybe another 10 min for a room. It wasn't too bad and our Social Worker showed up with some Miss Vickies Sweet Chili and Sour Cream chips after a conversation they'd had last week. Eric hasn't been eating much at home, but he gobbled up those chips, so maybe I'm just trying to feed him the wrong food at home, you know, breakfast, lunch, dinner... We had thought Eric might need a red blood cell transfusion, but his hemoglobin was exactly the same as last week. His platelets were 19, which is a slight improvement, but he needed to have a transfusion to hold him over to his next appointment scheduled for Wednesday. Everything went smoothly with the transfusion and we headed out early afternoon. When we were in clinic, I counted the transfusions Eric had in March and it was 1 blood transfusion and 7 platelets transfusions. Looking back, he's been averaging 7 platelets transfusions a month for the past 4 months, less in February because it was short, but 8 in January. 

Eric finished this cycle of treatment on Tuesday. He wasn't feeling too badly this round, just tired, but he does seem to be feeling better since Tuesday: a bit more energetic, a bit more appetite. His next appointment is on Wednesday for a Bone Marrow Biopsy. 

Eric is feeling pretty good, but woke up this morning saying he had a terrible sleep last night and is too tired to go to school today. Months ago I resolved not to fight with him over going to school, so he is staying home today. The city has been doing water main construction on our street (forever) and are finally ready to tie in the new line and our water will be off all day, so that is fun. It will be like when I was a teenager and we had to use a bucket of water to flush the toilet when the power went out, since we were on a well. I was pleased this was happening once the kids were back at school, but I guess Eric will get to enjoy the lack of water today. 

When we cleaned Eric's room, I pulled out all his stuffies and told him to sort through them and the ones he wants to keep have to fit in the drawer or on his bed. This picture is the after with the ones he wants to keep. Eric is actually on top of the bed, showing me that they do in fact fit on his bed. 

Weekly Check Up - Wednesday, March 19

It is Spring Break! We lounged around all day Saturday taking some time to rest and recharge. On Sunday the kids went up to the school to play 4-square and I threw the ball for the dog. We did the same Monday, but met some other people there and when I left, the kids stayed behind to play. They ended up spending the whole day running around the neighbourhood - up the hill, down the hill, up the hill, down a ravine, up a ravine... At 5pm, I called for Eric to come home since he has swimming lessons at 5:30. He crawled up the stairs "I'm so tired, my legs hurt..." 

I dragged him to swimming where he did 3 lengths (it's a small private pool, so short lengths) and then said he didn't feel well. I suggested he sit on the steps a few minutes and rest which he did, but then he called me over and said he felt like he was going to throw up. So I got him out of the pool as he put his hands over his mouth and started vomiting into his hands as I dragged him to the bathroom. He is still on treatment of course, but hasn't been nauseous much this past week and hasn't been taking any anti-nauseants the past few days, but must have over done it running all around the neighbourhood. 

The vomit actually wasn't the worst of it... I hustled Eric into the bathroom to vomit in the toilet and got some paper towel to get him cleaned up. When I turned back to him to give him the paper towel, I saw that there was fresh blood. I assumed it was coming from his nose, but I wiped his nose and it was clear. So the blood must have been coming from in his tummy. He and I were both freaked right out and I assumed we'd have to go to the hospital. I got him home and into the tub to warm up and wash the chlorine off and I called the oncologist on call. Turns out she wasn't even slightly worried. She asked a few questions, said it was probably just due to low platelets and to keep a close eye on him for any other bleeding, but we didn't have to come in. We were both so relieved not to have to come in; however, I was still concerned. In the morning (Tuesday), I called our Nurse Clinician and she asked even more questions and then went to review with the oncologist who is covering Eric's regular oncologist because he's away for Spring Break. We've met the covering oncologist a few times and she's lovely; she works closely with Eric's regular oncologist. Anyhow, she also wasn't worried and we did have an appointment the following day, on Wednesday. So with 2 trained professionals telling me not to worry, I decided not to worry. 

Eric took it easy on Tuesday and on Wednesday morning we headed in to clinic for his check up. Traffic was great both ways and clinic wasn't very busy; thank you Spring Break! Platelets were only 7 so he did get a transfusion. Additionally the doctor we saw recommended a stomach protectant, thinking perhaps his tummy was irritated and that caused the bleeding. Eric is annoyed with yet another medicine that he has to take, but we'll see if it makes a difference. Apparently it's just a matter of try and see, without doing a scope, which is invasive and not necessary at this time.

The doctor also said we were okay to go to Halfmoon Bay on Thursday, which was the little escape we had planned between Eric's visits. We're here Thursday to Sunday at Granny's place, with Grandma and 2 dogs in tow. It rained a lot on Thursday, but was nice and sunny (with a biting wind) for most of today, Friday. The kids played outside; the adults and dogs went for a walk and we all enjoyed a happy hour hot tub. 

We're back home Sunday evening and off to Eric's next clinic visit bright and early (too early for Spring Break) on Monday morning. 

Weekly Check Up - Tuesday, March 11 & Friday, March 14

Stupid time change aside, we had a pretty good weekend. We were lucky enough to be gifted tickets to the Canucks by Starlight Children's Foundation. They usually gift a pair of tickets, but this time we were actually offered 2 pairs! They were not in the same section, but I was excited for Joel to be able to attend as well. Unfortunately, for Chuck, he was away in Edmonton for school, but that was pretty fortunate for Grandma who got to attend with us! Sadly the Canucks lost to Dallas, but we all had a great time.  

And we had a visitor at home while we were out. Apparently the very short hibernation is over in the Lower Mainland. 

After having an unplanned visit last week due to a nose bleed, Eric had two clinic visits scheduled for this week on Tuesday and Friday. 

Tuesday's appointment was at 9:30 and traffic was horrific - no accidents, just volume. It took 1 hour and 10 min to get there and when we arrived they were digging up part of the parking lot so parking was also a nightmare! We ended up arriving at clinic quite late for the appointment. Eric's nurse accessed his port easily. Actually, we've learned that spate of difficulty with accessing his port was related to a problem with one lot of the needles. Thank heaven that is over; it was awful. 

Eric's platelets were low, so he received a platelet transfusion. His hemoglobin was also low and borderline for needing a transfusion. It would need to happen either Tuesday or Friday and I was too tired to make a decision. (Stupid time change!) However, Eric was quite certain that Tuesday was not the day. On the plus side, his team is able to plan ahead for Friday so it should be quicker, which is definitely a win when you have to have 2 transfusions in one visit. On the not so positive side, Eric has been absolutely exhausted all week. His treatment causes fatigue and then his low hemoglobin also causes low energy. 

In addition to the fatigue, his neutrophils, the germ fighting white cells, which are always low, have bottomed out from his treatment. They are reported as too low to count. Given the fatigue and the increased risk of illness, he didn't make it to school at all this week.   

Our next clinic appointment was supposed to be Friday, but we almost ended up with a Thursday appointment. Our booking clerk emailed me with a Thursday appointment saying the clinic was so full on Friday that they didn't have room for Eric. I used to think only Wednesday and Friday were clinic days since those are Eric's Oncologist's clinic days. However, since this era of low platelets (since December) I've learned that Monday and Tuesday are also possible. Now I figure only Thursday is untouchable since it's unlikely he'd be scheduled in between his doctor's 2 clinic days. As a consummate, but out of her element, planner, this means loading up Thursdays with everything that requires an appointment because I can't plan for any other day. So I had a dentist appointment, and an appointment with my counsellor, and Joel also had a dentist appointment. Luckily, our Nurse Clinician was able to move someone else and get us into clinic on Friday as planned. 

As mentioned above, the plan was to pre-order the blood so it would be ready to go when we arrived in clinic on Friday. Also, before giving blood, a group and screen (blood typing test) is required within 72 hours. Our nurse clinician arranged for one to be drawn before we left on Tuesday calculating that it would still be good when we arrived Friday so we could get started quickly. However, transfusion medicine asked for a new one Friday morning. Then they said they needed a hematopathologist to look at it; so much for planning ahead! An hour after Eric's port was accessed, the group and screen still wasn't complete, but the rest of the bloodwork was back. Turns out his counts had actually held pretty well from Tuesday, but they were still (always) low and so a top up was still a good plan. Eric's doctor ordered platelets after seeing the counts and they were ready before the group and screen, so we started with those instead. 

Apparently something weird was showing up on the group and screen. Eric's doctor said that sometimes happens with MDS patients because of the amount of abnormal cells, but we haven't had this problem before. Eric's blood type is A+ and his donor was as well, so there's no reason his blood type should change. Interestingly, his donor doesn't have to be the same blood type; it is HLA factors they match. 

Anyhow, eventually the group and screen was finished and was A+ as expected. Our nurse was so fast having the blood in the room just as the platelet flush was finishing. However, it's still a long day with 2 transfusions and we were at the hospital for 5 and a quarter hours. Though the last 5 minutes were for Eric to finish his Lego set! It is a Mandrake from Harry Potter. 

Traffic was a bit heavy on the way home; easy on the way there and they seem to be done digging up the parking lot. We made it home for our Friday Family Movie & Pizza night and are ready to start Spring Break! 

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 ;)