Week of Oct 11

Oh what a week! I wish I didn't feel compelled to say that so often.  

I was late with my post last week, so to round out the long weekend, I will just say that we did manage to get the Halloween decorations up on Monday and Eric was able to help out. The poor kid was so, so tired and his ankles were sore, but he powered through. 

Here's Eric hanging out with Grandma's dog, Lily, on Thanksgiving weekend. 

Tuesday we had clinic, and as expected since we were a day late due to the holiday, his platelets were "less than 5" which just means too low to bother counting. Eric's Oncologist was the Attending responsible for the inpatient ward this week, so we saw his lovely Nurse Practitioner. Also as expected, his blast count had risen from 2.4 to 4.9, so we decided to go ahead and start the oral chemo that we had discussed the previous week. He hasn't been on this med since he was diagnosed with the fungal infection in order to give his immune system a chance to fight the infection. However, with his blast count creeping up, we have to deal with it. The med he started is called Venetoclax. It is the one that put him into remission after his first relapse, but eventually stopped working as well. Unfortunately, the anti fungal medication interacts with this chemo, making it stronger, so it can be a bit tricky to dose. Eric's dose can be anywhere from 100mg to 400mg, so we started with a low dose of 100mg. We headed home, had dinner - Grandma was still visiting so her and I made dinner together - Eric took his chemo med at dinnertime, had a normal evening and Eric went to bed. 

Just after 1am, Joel woke me up to say that Eric was calling for me. The boys' bedrooms share a wall, but the primary is down the hall so I didn't hear him. I went to Eric's room; he said he wasn't feeling well and then threw up. After all of these years of chemo, I still can't do vomit, so I woke Chuck up to deal with the vomit while I comforted Eric and got him some anti nauseant meds. Eventually, I made it back to bed and then Joel woke me up again just after 2am. Eric was vomiting again. This time I was able to deal with it myself and get Eric settled back in bed, but at 2:40am, Joel woke me up AGAIN. This time Eric hadn't even bothered calling for me, he just knocked on the wall he shares with Joel when he started vomiting again. Again I cleaned it up myself and this time Eric seemed much more chipper, like he was finally actually feeling better. I was so hopeful that we were actually going to get some sleep after 3am and we did! Joel and I woke up at 7am and he was so tired heading off to school. Eric slept in until 8:30 or so. When he woke I checked his temp because he was warm. He had actually been warm during the night, but I didn't check his temp to see if he had a fever - which is bad! He did have a fever in the morning. I jumped in the shower, in case we ended up admitted to the hospital because the showers there suck, and then checked his temp again. It was still considered a fever so I called his NP and she asked us to come in, of course.

Luckily we were able to go into the clinic and not the ER. I took our overnight bag and all of our hospital stuff because most of the time when Eric has a fever he is admitted, but he did have some neutrophils so I was hopeful they'd let us go home. Once there Eric had to be accessed again, having been de-accessed the previous day because we weren't planning to come back. They took blood for cultures, as well as his regular bloodwork - CBC, electrolytes, etc. They also did a nasal swab to check for viruses and started an IV antibiotic. The initial counts came back and Eric's hemoglobin was low. This seems to happen every time that he has a fever; it just burns through his hemoglobin. His NP ordered blood and it arrived just as the antibiotic beeped that it was finished. However, that's when we discovered that our nurse had forgotten to unclamp the antibiotic line and actually none of the antibiotic had gone in. They sent the blood back and ran the antibiotic again. Eric was not happy and roasted his nurse. She felt really bad and apologized and they're buddies so I'm sure he'll get over it. The swab results came back and it was negative on everything; they do a big panel of like 15 viruses. The rest of his bloodwork came back and showed that his blast count was down to 2.2, from 4.9 the previous day, with only one dose of the Venetoclax. The bloodwork also showed some indicators of cell turnover quite elevated, so his body may have just been reacting to that rapid breakdown of blasts, rather than actually being sick with a virus. We were allowed to go home after the antibiotic and blood transfusion. It was a long day and we didn't get home until 6pm, but we were so happy to be allowed to go home!

We did have to go back to the clinic on Thursday so Eric could have another dose of the IV antibiotic. His NP said that they could do platelets on Thursday as well and then we'd be able to cancel our scheduled appointment for Friday, assuming the blood cultures don't grow anything. We had to go in for an early appointment because they wanted to check the level of the anti fungal in Eric's blood so it has to be done at 12 hours after the last dose and before the next dose is given. We were in peak rush hour and it took us forever to get to the hospital, but we expected it to be a quick appointment. Eric was already accessed and they could run the IV antibiotic while waiting for the platelets to arrive, which is exactly what happened, but then the platelets didn't arrive. We waited and waited and it took more than 2 hours for the platelets to arrive. We have no idea what happened or why they took so long, but our nurse wondered if maybe there was a trauma that was keeping TML (transfusion medicine) busy. Eric's NP came to review the bloodwork with me and told me his blast count was now down to 0.7! From 4.9 to 0.7 in 2 days with only 2 doses of chemo?!?! That's crazy!! She did prescribe an additional med for him that will help keep his electrolytes balanced while his cells turnover so quickly.   

We eventually got to leave after more than 4.5 hours - you can get platelets AND blood in only 5 hours if everything goes smoothly - and Eric asked if we could stop at McDonald's on the way home for some nuggies. He was also excited to learn that McDonald's is currently having their Monopoly promo and had me enter all the codes into the app. I can foresee him making me stop at McDs on the way home much more frequently now.

The cultures didn't grow anything so we were able to stay home on Friday. We were both exhausted from the previous 3 days and it was a much needed day of rest for us. 

On Saturday Chuck took Eric to another Pokémon card show in Port Moody. It seems to be a monthly event at this location and Eric was eagerly counting down the days until it arrived. He had his cards all organized and packed in his backpack days in advance. He had a great time at the show, but was exhausted he rest of the day. Sunday will be a much needed day of rest for him. 

We're back to the hospital on Wednesday this week for a long day since we've got Respirology, to monitor his pulmonary function while he fights the fungal infection, plus our regular clinic visit. 

Week of October 4

Thanksgiving Day and I just realized that I hadn't done a blog post for last week. Eric is still not feeling great and having more bad days than good days. He wasn't able to make it to school at all last week, but he did make it to the field trip at the swimming pool. 

I had to drive out to the pharmacy on Monday to pick up a refill of Eric's oral chemo. The one he's been on since restarting after the initial treatment for the fungal infection, the one that is not as hard on his immune system, is a liquid. It is in this huge bottle and his dose is 10mls and it's really hard to tell how many doses are left at any given time. At least I was able to go mid day when traffic isn't much of an issue and Eric was able to stay home. However, Eric was having a super duper bad headache and the pain meds weren't helping much. This lasted all day on Monday, and Tuesday as well. 

On Wednesday Eric had his clinic visit. I had let his Nurse Clinician know in advance about the headaches, and assuming that it was a result of low hemoglobin, she added a group and screen to his bloodwork. His platelets came nice and fast so we got those started and his Oncologist came by to let us know that Eric's hemoglobin was 79 so he ordered a blood transfusion as well. Eric was feeling okay and discovered there were lots of Pokémon at the hospital in Pokémon Go, so we went down to the lobby to catch them. 

We stayed downstairs about 20 minutes and then Eric was tired and wanted to go back to his room. It was good timing since the platelet transfusion finished right after we arrived. They got flushed and the blood arrived almost right away, which is so much better than having to wait for it since a blood transfusion takes so long. Eric's Oncologist came in for a longer chat with me. Eric's blast count was up a bit, but actually not too bad yet. It has been climbing - 1.4, 2, 2.4 - but not exploding. We discussed restarting another chemo, either IV or oral, but in the end we decided to wait and make a decision at his next appointment on Tuesday. He was feeling decent on Wednesday, except for the headaches, and we assumed that would go away with the blood transfusion. He hadn't been at school in almost 3 weeks, so I wanted him to be able to go to school Thursday and go on his field trip Friday and have a nice long weekend. 

He was planning to go to school on Thursday, but he slept quite late and I didn't want to wake him. He could have gone to school partway through the day, which he's done often in the past, but being in a new class, in a new school, he wasn't comfortable doing that. So he stayed home for the day and I agreed to wake him up at 7:30 on Friday so he could go to school on time. 

I woke him up Friday as planned, but he asked if he really had to go to school before the field trip. Of course I said he didn't have to go to school if he didn't want to so we made arrangements to meet his class at the pool. He had fun swimming, but was happy to see me for pick up because he wanted to go in the hot tub. However, the kids aren't allowed in the hot tub on a field trip, since they have to be supervised by someone over the age of 16. I stood and watched him for a few minutes in the hot tub so he could warm up.  

Friday might have been the peak of the week for Eric. On Saturday he wasn't feeling great again, and his ankles were hurting as well and he didn't really want to stand to put up the Halloween decorations, so he had a pretty chill day. Sunday he woke up again feeling poorly and was sad because we were having family over for Thanksgiving dinner. He did rally in the afternoon before dinner and had a good time with family, even getting to play one of his favourite games, Telestrations. 

Halloween decorations will go up on Monday; clinic Tuesday and Friday this week, due to the holiday on Monday. 

Week of Sept 27

I can't believe it's October already. Missing all of August in the outside world continues to mess me up. 

Eric ended up having a pretty rough Sunday. His head was killing him all day and he took pain meds multiple times and then ended up throwing up 3x as well. He didn't feel nauseous at all, but he does just randomly vomit fairly often. 

Monday his headache only required one dose of pain meds and he didn't throw up at all, but he was still very congested from his cold and not feeling great, so didn't make it to school. 

Tuesday we had clinic. Eric was still a little headache-y and still congested, but his Oncologist said his lungs sounded the best they have in months!!! Eric's counts were okay - for an oncology patient - except his platelets of course, so he got his platelet transfusion and off we went. It was nice to have a "normal" 3 hour platelet appointment, without extra scans, blood transfusions, or other delays. 

Wednesday was Truth and Reconciliation Day so no school. Eric had plans for a Pokémon trading hang with a couple of friends on Sunday, but they were all sick, so we'd rescheduled for Wednesday afternoon. Eric had been looking forward to it for days and had his binders all ready to go! We're still working on building up his strength and endurance from that long hospital stay, so we walked to his friend's house at the end of the street. After dropping him off, I dragged Chuck and Joel out for a walk on Shoreline Trail in Port Moody. It was a beautiful day and the path was very busy with walkers, runners, bicyclists and even a couple of rollerbladers, and there were lots and lots of orange shirts on display. A couple days before, Eric had told me that kids eat free at Boston Pizza for September and it's his favourite restaurant so we should go there before the end of September, so when we picked him up from his friend's house, we headed to BP for dinner. We actually had the worst service, but it was still nice family time. 

Wednesday evening, Eric got all ready for school the next day, but Thursday morning he woke up feeling poorly again and didn't make it to school. The congestion is a lot worse in the morning and gets better as the day progresses. It gave him lots of time to organize his Pokémon cards after the trades the previous day.  

Friday morning we had clinic again. Our clinic day this week was supposed to be Wednesday, but because of the holiday, we ended up having to go twice instead. Everything was going so well - the port access, the blood work, and maybe 20 minutes later the platelets arrived. Two nurses checked the bag and then the nurse was priming them, and all the while we were were talking about how the platelets were a weird colour, different from what we were used to. Just as she was finishing priming them, before connecting them to Eric's line, I said "they're psoralen treated, right?" She checked and the tag actually didn't say that. It usually says "psor" but this one didn't, so she called Transfusion Medicine (TML) and the tech says oh right, I forgot about that requirement for him. WHAT?!?! 

Eric is allergic to platelets and has had some really bad reactions in the past. What stopped the reactions was him having pre-meds (antihistamines) in advance AND having platelets that were "washed" which is what they do to remove any lingering proteins from when whole blood is separated into its components. We had to wait while they washed the platelets in the lab, which took forever and was a nightmare when he was actively bleeding post transplant. However, not too long after Eric's first relapse, they started using psoralen treated platelets instead. I have actually never looked up what that is, but the doctors assured me that it's just a new/better/easier method for making them non-reactive and after Eric didn't have any reactions with a few bags of psoralen treated platelets, I accepted that. At first, we would sometimes have to wait for psoralen treated platelets, but at some point, years ago, the hospital started psoralen treating all the platelets and we didn't have to wait and I didn't have to worry about if Eric's platelets had been psoralen treated. So I have no idea what happened on Friday, but TML had sent some platelets for Eric that were not psoralen treated and not washed and likely would have caused an allergic reaction. Then, after they were the ones who made the mistake, they wouldn't release a new bag of platelets, until they got the first bag back. Platelets are delicate and can't be tubed, so a porter has to pick them up. I guess the porters were busy because one didn't come for half an hour to take the platelets back to TML and then TML finally released the new bag, with a different porter of course, because why would anything at the hospital be efficient. It took 55 minutes to get the new bag of platelets. Eric was livid having waited around all that time. It was a bit of a longer appointment than normal, but really it is the expectation that we were going to have a quick appointment when the first bag of platelets arrived so quickly, only to have those hopes dashed watching the minutes tick by while you wait and wait.  

Meanwhile, we'd been planning to go to the Sunshine Coast for the weekend, but when Eric woke up still feeling pretty miserable from this cold, he and I discussed whether or not it was wise to take him a ferry ride away from the hospital. The Sechelt Hospital was very good to us when we had that emergency in August, but we really don't want a repeat of that. In the end it was Eric who decided that he shouldn't go; it felt too much like tempting fate. Through a variety of discussions all day, we decided that Joel and I would go to the Sunshine Coast for the weekend while Chuck and Eric stayed home. This is quite a departure from the norm for us; usually it's me and Eric, and Chuck and Joel partnered up. Joel and I have had a lovely weekend on the coast; the weather has been beautiful and we did a hike on Saturday and had lots of relaxing time. Back in the city, Chuck took Eric to approximately one bajillion trading card stores on Saturday in search of Pokémon cards and then they had White Spot and watched a Spiderman movie in the evening. Eric tells me it was a great day! 

Today, October 4th, is Millie's 5th birthday - Happy Birthday, Millie!!! - and the 4th anniversary of Eric's diagnosis. We didn't actually know his specific diagnosis on this day, but this is the day that our family doctor called after receiving the results of Eric's bloodwork from the previous day and told me that it looked like he had leukemia and to pack a bag and go to Children's Hospital. It was the day I called my mom in Spain and asked her to come home.  The day I called Chuck's mom and asked her to come to our house so she could pick up Joel after school. The day I called Chuck at work and told him it was an emergency and to come home right away. The day I hung up on someone at my work mid Zoom call.  It was the first time we'd ever been to Children's Hospital. It was only the second time taking one of my kids to the ER; Joel got stitches when he was 3. It was the day that the ER doctor told me, in a shocked tone of voice, "his hemoglobin is 50" and I said that I didn't know what that meant. It's the day Eric had his first blood transfusion, and his second. It's the day one nurse inserted an IV while he vomited on the second nurse holding his arm still. It's the day I learned that intra-nasal Midazolam has the opposite effect on Eric, not calming. The day I learned that the ER hall lights are too bright and they never turn them down. It was the first night either of my kids had stayed overnight in hospital since their birth. The first of many. And also the first of many nights that I would sit beside Eric's bed, not sleeping, just watching him.