Weekly Check Up Friday, Nov 22

Eric had his biopsy Monday, but since his counts were low, his NP didn't want to go a week and a half without another check, so we were back at clinic for a check up yesterday. 

The appointment was 9:30am, but we have to do bloodwork in the lab an hour before so that means leaving the house at 7:30am. There was an accident on the bridge and we enter the highway right after the bridge so traffic was amazing because it was all backed up behind the accident! I may have suggested that there should be an accident on the bridge every time we have to go to the hospital, but Eric advised me that was not very kind. 

We got to the lab early (before 8:30) but it was packed. Eric didn't want to wait in line and he was super grossed out by the busy room with almost no one in masks. I learned later it was a Pro-D for the Vancouver school district, which seems to make the lab a lot busier. Eric said he'd rather have his port accessed than wait in that room, so we headed off to clinic. When we arrived there, they said that they could actually just ask the blood lab to come to us, if we thought he wouldn't need his port accessed for transfusions that day. I figured it was 50-50 so we opted to have the lab come to us. Unfortunately, they took forever to get to us and our nurse actually found the tech wandering around in some random hallway :( 

Eventually, we got his bloodwork back and both his hemoglobin and platelets were borderline. In conjunction with Eric's team, we decided to go ahead with both blood and platelets knowing it would mean he would have a good weekend and hopefully we wouldn't have to come in again before next Friday. Of course this meant accessing Eric's port and then 4+ hours for both transfusions, including pre-meds, once they were available from the blood bank, which was after 12noon. It was a super long day and we didn't leave the hospital until 5pm, arriving home at 6:10pm. Luckily, Granny had come for a visit in the morning, and Eric's nurse should win an award for how quickly and smoothly she accessed the port. As soon as Eric heard he was having both blood and platelets, he headed straight for the Family Life Specialist to ask for LEGO and wow did she deliver:

This day was quite a bit longer than the one that stressed me out so badly last week, but without having to worry about what was happening at home this time, I was much less stressed. 

In terms of the biopsy results, there are 3 separate results that we are waiting on and we only have one, which is the least detailed. For the one that we have, the hematopathologist looked at the biopsy under the microscope and is able to see that the blasts are gone, which is an improvement from last month's biopsy. They are still able to see the abnormal cells, but it is the next report/result/analysis that will tell us at what % and the third report will be the one that tells us the % of donor cells remaining. Hopefully we will have the remaining 2 results by Wednesday and a chance to chat with Eric's doctor about next steps prior to his next appointment on Friday. 

In the meantime, Eric is 1.5 weeks off the chemo, loaded up on blood and platelets and feeling much better - less nauseous, etc. He only went to school one day last week, but it was a whole day! Here's hoping he makes it a few more days next week 🤞

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