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 ;)