Bone Marrow Biopsy Mon, Nov 18

Eric and I headed into clinic yesterday morning for a rare Monday appointment. He was scheduled for a bone marrow biopsy. All in all, it was not a bad day. I'd have to actually count to be sure, but I think Eric has had about 12 of these, so he knows exactly what to expect. He isn't scared and actually says he enjoys being put to sleep. Our appointment was at the same time as last week so I was worried about traffic, but it wasn't raining and I guess less people go to work/school on Mondays so it wasn't too bad, better by about 10 minutes than last week. Eric does have to fast for the sedation, but the procedure list was short yesterday and he got to go first, so he was in the procedure room by 9:30am. While he was having his procedure I was able to pick up prescriptions at the pharmacy and get him the Chocolate Milk 2Go at Starbucks that he always wants when he wakes up. Meanwhile, our team was also hard at work. Eric's bloodwork came back and his platelets were very low (13 again) so our Nurse Practitioner was able to order his platelets and pre-meds so they were ready when his procedure was finished. Unfortunately for Eric, he was just waking up from sedation when they hit him with Benadryl, but he had a nice nap while he got the platelet transfusion and when he woke up it was almost time to go. Even with a slight delay between the pre-meds and platelets, we were home by 2pm and traffic was a breeze! Quite randomly, Eric decided he wanted to make a milkshake when we got home, so we whipped up a strawberry shake!  

As a result of Eric's low blood counts, we have to go back to clinic on Friday for a check up. At that time we should also be able to get some of the results from yesterday's biopsy. The chimerism (DNA) is done in Seattle and usually takes a little longer, but the report from the pathologist (hematopathologist?) should be ready by Friday. This will tell us the % of abnormal cells in the marrow. There are 3 possible outcomes from this last round of treatment: 1. it hasn't worked; the abnormal cells have increased and the donor cells have decreased, 2. it has prevented the disease from progressing; the abnormal cells and donor cells remain about the same, or 3. it has worked; abnormal cells have decreased and the donor cells have increased. Our team will have a plan for the next steps in treatment once we know which of these scenarios has occurred. 

Eric does seem to be feeling a little better this week, since finishing the oral chemo on Wednesday. He's a little less nauseous and a little less tired. We had big plans for him to go to school today, but he woke up quite sore from his biopsy yesterday. That has only happened once before, when they had trouble getting enough marrow for the biopsy. The doctor has explained previously that with his counts so low, his marrow is relatively empty. We'll try for school again tomorrow 🤞

Eric waiting for his biopsy at clinic

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Weekly Check Up Wednesday November 13

It's Thursday at 11:30am and I am sitting on the couch with a cup of tea and my laptop nursing my hospital hangover from yesterday. It was the longest day we've had in quite some time. Our appointment was a little earlier than the last couple weeks, but I figured we'd roll with it and hope traffic would be better. It wasn't. Also, Eric wasn't feeling well and he forgot his switch when he was in the middle of a game, so this made for a long and whiney drive. The blood lab was nice and quick so that was a highlight. Then off to clinic where we learned that Eric needed both a platelet and a red blood cell transfusion at which point we knew it would be a long day. The transfusions themselves take awhile, but all the in between is what makes it so long - access the port, send a group and screen to the lab for blood typing (has to be done within 72 hours of blood transfusions), give the premeds, run a flush, get the platelets up to the floor from the blood bank, run the platelets, run a flush, get the blood up to the floor from the blood lab, run the blood, run a flush. Luckily the platelets were on site, so we didn't have to wait for them to come over from Canada Blood Services, but unfortunately just as our nurse was about to start the platelets there was a Code Blue. Everyone is fine, and Eric didn't even know that it happened, but I find it quite traumatic. By the time we were finished, 7 hours after our arrival, we ended up in rush hour traffic again. Thank heaven for Kristina, the outpatient Child Life Specialist, who gave Eric a Lego set to keep him occupied. The set was over 600 pieces and he put in the last one just as the flush finished on his blood transfusion. Perfect timing!

Unfortunately we were so long that we ended up missing Joel's swimming lesson (Chuck was working), but on the plus side, we got some A&W for dinner and chilled out for the rest of the evening.

Usually when Eric gets a red blood cell transfusion, he gets quite a boost of energy and is bouncing off the walls. He noticed last evening that didn't happen and he was still feeling quite tired. Then, shortly before bed, he started getting significant pain in his legs. This has happened in the hospital before and best guess is that it is his cells coming back in after treatment has knocked them all out. On the plus side, he woke up this morning with less pain in his legs and while he wasn't feeling great, he did head off to school at regular time and is still there! Not to jinx it, but this is his longest day since Halloween 🤞He also finished this cycle of oral chemo yesterday. I am hoping between the red blood cells to perk him up and the end of the oral chemo making him feel crappy, he'll have a great weekend. 

Next steps: bone marrow biopsy on Monday

Photo credit to Jen Oke @ Coast Photo Co

Weekly Check Up Wednesday, Nov 6

I just realized that I hadn't posted after Eric's last check up on Wednesday. It was such a busy day and then I spent all of Thursday recovering on my couch with Netflix 🤣

Grandma came with us for our check up this week. First we hit the blood lab, which was practically empty - yay!!! And since we're super smart (or slowly learning) we put Emla on Eric's chest while at the blood lab, in case he needed his port accessed for a transfusion in clinic. Then it wasn't on too long - from when we left home - or having to wait for it to work in clinic. Turns out it was a very smart move, since Eric's platelets were THIRTEEN! Normal would be 300ish and 13 is definitely risk of uncontrolled bleeding territory. They were 25 last week and he had a transfusion but they continued to decrease over the week. This isn't really a surprise since platelets only live a couple days and require healthy bone marrow to continue to be produced. Anyhow, long story short, this meant Eric did need his port accessed so that he could have a platelet transfusion. Luckily this time the fancy psoralen platelets were on site so his nurse was able to start the pre-meds, which he needs due to his platelet allergy, immediately and we got home 2 hours earlier than the previous week. Thank heaven since Grandma and I both desperately needed naps; Eric already had one from the Benadryl 😉 

Eric's hemoglobin and white blood cells counts are low, but holding steady. His next check up is next Wednesday, which is also his last day in this cycle of oral chemo. We'll see how his counts are next week and schedule a bone marrow biopsy, likely for the following week. The results of the biopsy will inform next steps in treatment. Eric continues to feel very tired, somewhat nauseous and have little appetite, so while I hope this treatment works, I also hope that we will be able to find a better balance going forward. 

While at the hospital on Wednesday, we stopped by the gift shop and picked up our calendar. I am running out of words to describe just how beautiful it is. I love the 3 Little Pigs, with a Pug, and Puss in Boots with Whiskey the therapy CAT. The calendar is available at the BC Women's and Children's Hospital Gift Shop, as well as their thrift stores around Vancouver for $25 + tax = $28. Also, for the month of November, you can request to have the calendar mailed to you for $28 plus shipping & handling by emailing Shannon at pettherapycalendar@gmail.com

Wednesday Check Up

Eric had a check up at clinic today. His numbers are holding relatively steady from last week. The dr says this is good news; we know from the numbers that he isn't getting worse. Though, he did need another platelet transfusion today, which made for another long day. The pet therapy dogs did a costume parade this afternoon which was adorable. Unfortunately, Eric missed it because he was bust having a Benadryl induced nap. 

He's been struggling with quite a bit of nausea this past week. We're doing our best to control it, but it sucks! He did go to school for a couple hours on Monday and Tuesday, but just isn't well enough to make whole days. 

Exciting news: the BCCHF Pet Therapy calendar is going to be released on Friday, November 1. It is available at the hospital Gift Shop for $25 plus tax ($28 total). Eric and Edward the Bunny are the stars for the month of April, but the whole calendar is truly spectacular. If you would like a copy, but aren't near the hospital, I would be happy to pick one up for you, just let me know. 

Eric is super excited for Halloween tomorrow!!!

Biopsy Results

Eric had a clinic visit yesterday, Friday. It was a looong day. Usually we go to the lab for bloodwork before his appointment, but at 9:50am the line up was not just out the door, which we've seen once before, but also down the hall, which we've never seen before. Eric took one look and said NO. It was 50/50 he'd have to have his port accessed for a transfusion anyhow so we decided just to go to clinic and and have his port accessed for bloodwork. We stopped at Starbucks on the way so Eric could get a Milk 2 Go Chocolate Milk, his favourite Starbucks beverage! He also wanted to try the charcuterie snack box, but rejected it, along with pretty much everything else he tried yesterday. 

We hadn't put Emla on his chest before we left the house so had to do that at clinic and then wait for it to numb before he could be accessed for bloodwork. His doctor came by to let us know that all of Eric's counts are down from the last bloodwork which was done Monday and that he recommended a platelet transfusion. Luckily they had the fancy platelets that Eric needs due to his allergy on site so they were able to start the pre-meds right away followed by the platelets. Unfortunately, it was still 3:20 before we left, so traffic home was already pretty heavy. We got home at 4:30 giving us an hour and a half to rest before Eric's school Halloween Dance. 

Eric is the one with 2 heads 🤣

We did also receive the results of Eric's bone marrow biopsy from October 16. The marrow is showing 17-20% blasts (not great), 78% of the abnormal cells that mark his disease (pretty bad) and 52% donor DNA. Obviously we'd like the donor DNA to be 100% as we've been seeing for the last 6-8 months, but the fact that there is still donor DNA is hopeful. The hope is that the current treatment will suppress the bad cells and allow the donor cells to make a resurgence, which is what happened last time. We are hopeful because Eric's donor cells did win the fight with his bad cells last time. Today is day 10 of the 28 day cycle and we won't know if it is working until Eric has another bone marrow biopsy at the end of this cycle. While this treatment is more aggressive than what he has been receiving, we hope that Eric will tolerate it okay and be able to attend school and other activities. For the most part, he is not nauseous, but his appetite has taken a serious hit. We are currently working to balance his meds to minimize the side effects. 

Today we are off to the pumpkin patch, back to school Monday and next clinic appointment is Wednesday. 

Discharged & Beads of Courage

Eric was discharged yesterday afternoon after his last dose of IV chemo and a platelet transfusion. We got home about 4pm and were both absolutely exhausted. Chuck and Joel weren't home to look after us, but luckily, a lovely neighbour ordered us pizza for dinner. 

Eric is still taking his oral chemo, at a substantially increased dose, for another 23 days. He won't be back at school this week because he needs time to rest and its a short week anyhow. We're doing a bit of school work at home this week and our big job is to clean his room - send help!!!

The hospital has a program called Beads of Courage where Eric gets beads for all the difficult things he has to do - pokes, tests, chemo, transfusions, hospital stays, etc. I caught up on his missing beads just our last hospital stay. We strung them this morning and took a picture stretched down the hallway. Its 15-16 feet of beads and actually isn't even complete. When we were in for long stays, Child Life suggested we do a bead a week instead of for each night. Additionally, I didn't get beads for his 28 day cycles of oral chemo, just the IV doses. 

That's a lot of courage! 

Inpatient Day 4

We woke up this morning after 3 nights spent in hospital. Eric immediately started building Lego and is on his 6th set since we got here. Thank you very much to the people who sent Lego to keep Eric entertained; it has been amazing. So far we've been able to stay off contact precautions (isolation) which is a huge win because it means we can get out of our room and Eric has been able to wander the halls looking for Pokémon. One of our amazing Child Life Specialists hid about 50 Pokémon stickers around the ward for Eric to find and then Eric hid some for me to find and when I found them all, he did it again, but harder! He is also spending his time tormenting the staff with his cockroach toy, which is super creepy and moves all on its own. He even left a vaguely threatening note to his night nurse the first night here to warn her. 

Get ready and good luck. Hahaha :) Watch out. 

Initially on starting the new cycle of IV chemo, Eric had some digestive distress, and then upon starting the new cycle of oral chemo, he had some nausea. However, it seems to have settled out relatively quickly and with some anti emetics to manage nausea, he's feeling pretty good. However, his dose of oral chemo will increase today, so we will see what happens next. 

It looks like we might actually be able to go home tomorrow. I had assumed we'd be here for 7 days of IV chemo, but his doctor is actually only doing 5 days. However, he's also quadrupled the oral chemo dose, so I'm not counting on being able to go home tomorrow, depending on how Eric responds to the increase. 

Luckily Eric was feeling well enough yesterday that we were able to get a day pass and Eric could attend a pizza and movie party at a friend's house in the afternoon. He was really looking forward to the party so it was nice that his doctor was able to make that happen. 

Getting a pass yesterday also allowed me to make it home for my appointment for my flu and covid vaccines. Since Eric can't be vaccinated, it's really important that everyone around him is vaccinated in order to protect him. Chuck and Joel also got vaccinated yesterday.

We don't have the complete biopsy results yet, but hope that we will by his clinic appointment on Friday so his doctor can round out his plan for moving forward and discuss with us.