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. 

Week of Sept 20

Eric spent a lot of time on Pokémon over the weekend. On Saturday, he went to a local card show/trading event with a couple friends. That evening the people he rode with while on tour with Cops for Cancer sent him some money for Pokémon cards, so of course he had to go to the card store on Sunday. He went with another friend after they spent some time playing Yu-Gi-Oh and looking at his Pokémon cards. After all the busy social activity, he spent the rest of the weekend organizing his Pokémon cards. 

Monday morning we had clinic. It took FOREVER for this platelets to arrive, but he was happily playing on the Xbox in the Teen Lounge. The appointment was fairly uneventful. We saw his NP and she said he looked really good, much better than last time she'd seen him, since she'd been away a few weeks. He was feeling pretty good too. Even though his platelets took forever, they were done by 12:30 and Eric had an appointment for an abdominal ultrasound and CT at 1:15pm so we went to the cafeteria with Grandma, who was visiting for a few days, for lunch. It was a great way to kill some time and get a quick lunch before the scans. Infectious Disease wanted the scans since it is about 6 weeks since Eric started treatment for the fungal infection and they wanted to see how things were progressing. 

Tuesday morning Eric was ready to go back to school. I dropped him off and mom and I went to Costco, which I had been procrastinating for weeks. Eric stayed the whole day at school and when I picked him up it sounded like he'd had a great day. 

Unfortunately, Wednesday morning he woke up not feeling great. He had a headache and was nauseous, but his nose was also really stuffy, so he decided to stay home from school. Also unfortunately, I had to drive all the way to the hospital because I had forgotten to pick up a prescription that was ready at the pharmacy when we were in on Monday, and Eric ran out Wednesday morning, so I couldn't wait until we were back on Friday. Lucky for mom it meant she got a ride to the airport. 

Thursday morning, Eric was feeling a little better, but still really stuffy and also very tired, so he stayed home from school again. 

Friday was a pro-d day, but Eric had to go to clinic. Our appointment wasn't until noon so we had a nice slow morning and a bit of a sleep in. However, when we arrived at clinic there was no room available. I hate later appointments for this reason. We waited almost an hour for a room and Eric was so upset, and then he ended up throwing up. What a disaster. When we finally got into a room, Eric's nurse was well aware of how long we'd been waiting and got him accessed right away. Amazingly, TML (transfusion medicine) was also cooperating and sent the platelets right away without waiting for a platelet count to come back. Unfortunately, when the blood counts did come back, Eric's hemoglobin was also low. Eric didn't want to stay and we debated, but in the end, he chose to get the blood transfusion as well, knowing that it would make him feel better. At least with the long appointment we had time not only to chat with Eric's Oncologist and NP, but also to chat with the Infectious Disease doctor. She came by to review Monday's scans with me. Overall, the fungal infection looks somewhat improved. Eric initially had 1 fungal lesion on his liver, 2 on his lungs and then what they call "ground glass opacities" in his lungs, which is basically just hazy areas on the scan that indicate infection. On the scans from Monday, the hazy areas are completely gone, the liver lesion is the same size, one of the lung lesions is the same size and the other is actually a little bit bigger. The doctor isn't worried about that one being a little bigger because overall things appear better, so it could just be part of the process of it breaking down. She is pleased with the progress so far and says we will keep treating with the oral anti-fungal and she doesn't think we need to repeat those scans for another 3 months. However, they can't see the trachea well from imaging and it was the area most affected initially, plus between the debridement in mid-August and the bronchoscopy in early September more deposits formed, so she would like for Eric to have another bronchoscopy in 4-6 weeks. Eric's blast count (cancer cells) were up a little at this appointment, but still in a place where we will tolerate in order to have some limited immune function to continue to fight the fungal infection. We ended up not finishing up at the hospital until 5pm and got home a little after 6pm. 

Eric has big plans for me to take him to Spirit Halloween this weekend. He loves Halloween and is always insisting we add to our Halloween decor. We've got some random bones and grave stones, a big spider web, and a couple inflatables; he says this year we need a statue. He's also meeting a couple friends on Sunday to trade Pokémon cards. 

Our clinic appointment next week is supposed to be on Wednesday, but since that is a holiday and clinic is closed, we have to go Tuesday and Friday instead. 

Week of Sept 13

It's still been a fairly busy week, but a much better kind of busy! 

On Monday Eric went to school for the full day! They finally got into their classrooms with their teachers, so it was nice for him to find out who his classmates would be, but it was also a bit of chaos attempting to get the class settled and organized. They were learning how to use combination locks and getting their lockers - a highlight of middle school according to the Grade 5s at their leaving ceremony. Unfortunately Eric's lock was broken, so he didn't get his locker set up on Monday and had to carry his school supplies back home. 

On Tuesday we were meeting Cops for Cancer at 11:30am and Eric elected not to go to school before that. He was very tired after the full and busy day Monday. We met the Cops for Cancer at Thrifty Foods in Port Moody where we enjoyed lunch with them. One of the riders is an avid Lego builder/displayer/collector and she and Eric chatted up a storm. She told me Eric needed a Lego room, like she has; I told her Eric needs his own house! It was great to see some returning riders from when we visited them last year and lots of new riders as well. From Thrifty Foods we headed out on the road with them. This year we were in the Sprinter van that picked up riders along the route if needed. We had a lovely police officer driving us and Eric got to sit up front with her. He did press the lights and sirens buttons a couple times but they're way up on the roof of the Sprinter and he couldn't quite reach! In the van, we also had a member of the tour support team who had been a pediatric cancer patient himself. They were both absolutely lovely, chatted Pokémon with Eric and let him pick the music in the van. Right after we left Thrifty's, one of the riders bailed. He tried to get back on his bike but his chain was not cooperating, so we pulled over and he and his bike hopped in the van. It's amazing how fast they are! He was fine; he said he'd been showing off and then almost hit another rider so he had to make the choice to bail instead of taking them both out. Then just before the next stop, we had another rider hop in. Her chain also was not cooperating. At the next stop, the bike repair person got the riders fixed up and the rest of that day passed without us having to pick up any more riders. We had a couple school stops in Poco and then toodled around Pitt Meadows a bit before stopping at The Patch Brewery, which is where tour ended for the day. Before we headed home, one of the riders gave Eric a custom made challenge coin for Tour de Coast 2026 which he absolutely loves. It is a very cool challenge coin with lots of texture on both sides. We had a great time on tour again this year and love to be included. The riders are always so thankful to us for attending because they like to see who they are riding for. However, we're the ones who owe them all the thanks. All of these people commit to fundraising and training and then riding 800kms in 8 days - rain or shine, hills and flat, sore butts and legs - so that Eric can go to camp, just like any other kid. Their fundraising directly supports Camp Goodtimes and childhood cancer research in Canada. 

Since it's September and Childhood Cancer Awareness month, I will get on my soap box for a minute and say that only 7% of cancer research funding in Canada goes to childhood cancer research, and that includes the money raised by Cops for Cancer. It is not enough. Childhood cancers are not the same as adults cancers in a smaller body. Adult cancers are often a product of environmental factors and childhood cancers are not. For the most part we still don't know what causes most childhood cancers. To support research in Canada: Cops for Cancer Tour de Coast or Michael Cuccione Foundation

On Wednesday we had clinic. The appointment wasn't until 10:30, but it still took an hour to get there which seems ridiculous. This week I've actually had 3 different people comment on the traffic in Vancouver - and one of them was Tom Cochrane! Clinic was relatively uneventful, but a little slow. Eric had his port access, got his platelet transfusion and I had a good chat with his Oncologist about where things were at and where they were headed. Eric's blast count is still relatively low following the IV chemo and he continues to take one (newer to us) oral chemo that has a lesser impact on his immune system. This is so that his immune system can work to fight the fungal infection. However, we'll have to keep a really close eye on his blast count and may need to add additional treatment to keep that under control as well. Fungal infections are slow to treat and even worse in the immune compromised, obviously. The Oncologist said he expects Eric will be undergoing treatment for the fungal infection for at least 3 months. Eric's Oncologist showed him the before and after pics of the debridement of his trachea and he was unimpressed. Apparently he didn't think it would be so gross. Infectious Disease wants Eric to have updated scans after about 6 weeks of treatment, so the Oncologist is hoping to get those booked the same day as one of our appointments next week. 

Thursday Eric went to school. The poor kid's backpack was so heavy that he could barely carry it, and that's after I took the binders out and put them in a separate bag. He had all of his school supplies, laptop, lunch and full water bottle. He was very happy to be able to drop his school supplies off in his locker. He only made it a half day but when I picked him up at lunchtime, he was chatting up a storm, so I guess he had a pretty good morning. 

On Friday Eric went back to school and actually stayed the whole day. I was expecting a call at lunch time and was really surprised not to get one. Of course, on all the days for him to stay at school all day, Chuck and I had been planning to go downtown about 2pm, but I had to pick Eric up from school at 2:45pm. He had a good day at school, but was really, really tired at the end of the day. 

Chuck and I headed downtown and left the kids at home with Grandma, whose flight had been delayed, so she didn't arrive until after we left! We had been invited to Beedie Rocks, which is a fundraiser organized by the Beedie Foundation, and this year they were supporting the Tyler Robinson Foundation. TRF supports families of pediatric cancer patients with everyday expenses like mortgages and car payments. Additionally they cover travel costs for treatment and offer a "family fun" grant. Tyler Robinson had pediatric cancer and he loved Imagine Dragons and particularly their song It's Time. During treatment, Tyler's older brother snuck him out of the hospital to see an Imagine Dragons show. Unfortunately, Tyler did pass away from cancer, but his family and Imagine Dragons created the foundation in his name. We became a TRF family in July of this year and the organization is literally unbelievable; when I was connected with them, I asked another family "Is this for real?" 

Beedie Rocks is held in Stanley Park and this is their 10th year. Attendance is invite only and is made up of Beedie employees, business partners and community leaders. There were about 3700 people there, 8 bands and 1 comedian across 2 stages, food trucks and bars all included, and headlined by Imagine Dragons, who were absolutely spectacular. Chuck and I got to meet the band and we were given an autographed album. This is where Tom Cochrane, who performed earlier in the evening, mentioned, repeatedly, how bad traffic was in Vancouver. The entire evening was absolutely spectacular, again leaving me asking "Is this for real?" At the end of the evening, the Beedie family revealed to Tyler Robinson's older brother, and other TRF representatives, that they had raised $3.6 MILLION dollars!!! 

Eric has a Pokémon show and a playdate planned for the weekend and we're back to clinic Monday and Friday next week. 

Week of Sept 6

Woah that was a busy week and I'm still having trouble believing it is September. Eric did almost nothing on Sunday and Monday, as planned. Though we did go to brunch on Monday with some of our friends. It is something we usually do after the first short day of school, but since we weren't able to go on Tuesday, we gathered some friends for a pre-back to school breakfast. Unfortunately, Joel wasn't able to attend because he wasn't feeling well. 

Tuesday morning was a bit rough because Eric's procedure was scheduled for 11:15. They wanted us to check in on T3 for the procedure at 9:45, but Eric needed 2 units of platelets on T8 first, so I woke Eric up at 6:30am to get to the clinic by 8am when they opened. Part way through the first bag of platelets, our nurse clinician came and asked if I had heard from the T3 pre-anesthesia clinic because it sounded like Eric had been bumped, but she wasn't able to get a new time and I hadn't heard from them at all. His platelets were running late past the check in time on T3 and I still hadn't heard from them so I decided to call. That is when I learned that there had been an emergency and it went into the OR that Eric was scheduled in. They hadn't called me because they didn't know how long it would be or have a new time. They told me we could finish the platelets upstairs and that Eric was now allowed to have clear fluids until 12:30. This was not good news because they usually like to stop clear fluids 2 hours prior to procedure, so I was thinking maybe 2:30 and Eric had been fasting since the night before. He was not happy. 

Once the platelets finished, we figured we may as well check in and wait on T3 and hope for the best. They did end up moving him over to a different OR that had finished early for the day and he got in just before 2pm. The Respirology Fellow came to see us prior to going into the room to get consent and told me they were only doing a bronchoscopy. That is just looking with a small camera. I had been told they were doing a lavage and/or debridement as necessary for any remaining fungal deposits, since he was no longer taking the inhaled anti-fungal. However, she said no, that the plan was only going to look to see how things looked after finishing the treatment with the inhaled anti-fungal. I asked what if you see something in there and she said no, that wasn't the plan and ENT wasn't there anyhow, they are the ones with the tools to do the debridement whereas Respirology only does the lavage. Presumably ENT wasn't there because they weren't invited but I guess that's above my paygrade. Grr! I went in with Eric until he was asleep and they told me the actual procedure would be like 5 minutes. Seriously?!? We got up at 6:30am and fasted until 2pm for 5 minutes and just a quick look!!! I did ask if he was able to eat right away afterward and they said yes so I went and got him a grilled cheese from Starbucks as he had requested. Shortly after, the Respirology team came and got me from the waiting room to let me know what they saw on the bronch. Previously there had been fungal deposits everywhere through his trachea and down toward his lungs and that was all clear now, but there were now 3 larger spots in his trachea.   

I went back to the waiting room and the post anesthesia nurses came to get me because Eric was already awake. He always wakes up fast, so that wasn't a surprise, but he was not doing well and that was a surprise. He has had a LOT of anesthesia and never woken up like this. Watching him and trying to comfort him, all I could think was that it was like a bad trip. He was saying why do I feel like this, I don't want this, when will it stop. It was horrible to watch and not be able to do anything. He did go from that to angry, which we have seen before coming out of anesthesia but it hasn't happen in years. Neither of us were prepared for this after having a couple of years of really good wake ups. Also, he wasn't allowed to eat anything!!! They had used a numbing spray so he couldn't eat or drink for an hour. So much for the grilled cheese he'd been promised. After about an hour he was able to calmly watch his iPad and just rest for another hour before we were allowed to leave at 4:30, just in time for traffic. 

After that ridiculous day, I knew it was asking a lot for Eric to go to school on Wednesday, but since he's starting a new school this year, we wanted him to get to go with his peers. Technically Tuesday was the first day of school, but they just stood in the field for a half hour and Wednesday was the first full day of school. Luckily Eric had a good sleep and was ready to go to school in the morning. We had found out from his friend where his "team" was supposed to meet so I dropped him off at the school and off he went, so comfortable and confident!

His new school is near the grocery store so I grabbed some groceries and was still home before 9am. After not having been home much myself for the last month I got to putter around the house all by myself all morning and it was amazing! Eric called just before noon and asked to be picked up. He was feeling a bit dizzy, but had a really good morning and was chatting away about the kids he was with that day and the activities they'd done. Unfortunately, he continued to feel dizzy as the day went on and was feeling pretty poorly in the evening. 

He had a good sleep, but wasn't feeling well enough to make it to school on Thursday. Luckily they aren't in their actual classes until Monday, so he really isn't missing anything. He spent the day resting while I did more puttering. On Thursday afternoon I was on a call with my counsellor - she lives in Victoria so I meet with her virtually - when I got FOUR calls from the hospital. I wasn't worried because Eric was with me, but I was annoyed! Can't they just leave a message?!?! It turns out that it was both Respirology and ENT calling me and they were madly calling because the ENT had a cancellation on their OR schedule for the following day. Respirology was calling me to let me know I had a couple of options. One is to leave the deposits/plaques and hope they shrink with treatment until the next bronchoscopy which they were planning for the beginning of October. Or, ENT has a cancellation on their schedule so they could go and clean up the plaques on Friday. I told him that I wanted that option and reminded him that I had wanted them removed on Tuesday!!! 

The pre-anesthesia clinic didn't call until after 4pm to give us his OR time, which was 1:20pm. Eric was not happy about having to fast until then. We already had a clinic appointment for 10:30am on Friday so they decided to give him 2 units of platelets again since he would actually be having the debridement this time. Unfortunately, it turned out that his hemoglobin was low as well which I had not expected because it had been over 100 at the appointment on Tuesday. There wasn't time to do a blood transfusion before the procedure, and, in order to do it after, Eric would have to recover on T3  for 2 hours and then go back up to T8 and start the blood transfusion in the clinic and then maybe finish it in the ward after clinic closed. However, clinic can't start blood after a certain time and the ward was still full. The clinic doctor ended up calling the head anesthesiologist in the OR and asking if they would be willing to run the blood in the procedure and they agreed! This was the best solution because they can transfuse it quickly in the OR and we didn't have to wait around for extra time. I felt like we were finally catching a much needed break!

On T3, the anesthesia resident came by to chat with us and we both emphatically told him not to do whatever was done on Tuesday. He said he'd read over the notes carefully so that hopefully Eric could have a better wake up. It seemed like everything was on track to be on time, but then it took another 30 minutes for the OR nurse to arrive and then she couldn't find my consent for blood products in the computer. They were now 40 minutes late and Eric was starving and getting very upset, so I called our nurse clinician. She found the blood consent in the computer, printed it and tubed it to T3 so we were finally able to get started. They figured they be about an hour this time. I went to have a 2pm lunch in the cafeteria and then headed back to the waiting room. I was reading my book and falling asleep when the ENT came out to talk to me after maybe an hour and a half. She said it had been more difficult than she had anticipated, but that she got all of the fungal deposits. She showed me a couple (gross) photos of the before and after and it really did look much better, but also very inflamed. She said because it had been more difficult and because his trachea was so inflamed, she wanted us to stay overnight. So much for catching a break with the blood; now that we were staying over, we had lots of time. She had already spoken to Eric's Oncologist and he was okay for us to be admitted to T6, which is the surgical recovery floor. Normally we would go to T8 even after surgery, but they are full. I asked her for an early discharge the following day and she said that wasn't a problem. 

Eric woke up much better. We had agreed in advance not to get him food until we knew he could eat, in case they used the numbing spray again, but the procedure had been long enough that he was actually able to eat fairly quickly afterward. He asked for McDonald's hotcakes, so I had them delivered. Thank heaven for all day breakfast. Eric was upset about having to stay overnight, and even more upset that it was T6, but I had packed a bag and brought my mattress topper, just in case. Unfortunately, I couldn't actually use my mattress topper because I got the parent "park bench" and not the parent "bed." It was weird being on T6; I kept getting confused in the elevator and they repeatedly tried to give Eric Tylenol and Advil, which Oncology patients are not allowed. We did not sleep well, no surprise, but the ENT doctor woke us up just before 8am to discharge us. Eric still had to do his meds and have his port de-accessed, but at least we weren't waiting on the doctor. Saturday morning traffic was great and we got home by 10:30 and I was back in bed for a nap by 11:15am. 

Saturday afternoon we headed downtown to take part in the Driven Project. It is a charitable organization that provides "supercar therapy" internationally and in the Lower Mainland they have partnered with the BC Lions. Eric and the other kiddos got to ride in one of the supercars through downtown and up to Cypress Mountain and then they swapped cars and rode back through downtown to the Plaza of Nations where we (the families) met them. The kids were escorted across the street and onto the field at BC Place stadium where they watched warm up from the sidelines.  Next they formed part of the tunnel on the field that the players run through and then they all stood together for the coin toss. Finally they left the field and were escorted up to a massive suite with kid friendly food - nuggets, pizza, mac & cheese, hot dogs, pop and juice - to watch the game. I was on the field with Eric while Chuck and Joel waited up in the suite. Unfortunately, it was a long wait between the cars and getting up to the suite and Eric was done - and starving! It was almost 7:30 when we finally got up there. We had some food and left at the end of the first quarter. It was too bad we didn't get to watch the game, but Eric was beyond ready to be at home after such a long day and a poor sleep the night before. On the drive home from downtown Eric made plans to spend all of Sunday on the couch watching tv and playing on his iPad.

We did get some great photos and lots posted on the Driven Project and BC Lions social media. Eric rode in a Ford GT and a Lamborghini Revuelto. He told me that he had chosen the 2 fastest cars there. Later someone else told me he'd chosen the 2 most expensive cars there. Eric said the second car was more comfortable than the first one, but he enjoyed chatting with the first driver. 

Back to school Monday and clinic Wednesday! 

Week of Aug 30

Eric has officially been away from home for more than a month. We left for our vacation on July 29. He also was not home at all for all of August, since it is now September. What a terrible way to mark time. 

I came back to the hospital on Sunday afternoon and not much had changed. Eric was continuing to feel fairly well and it had been an uneventful weekend. He did finish his giant LEGO set. 

Since Eric was doing well and his Oncologist had said he'd like to get us out before the long weekend, I had begun to believe we'd be out by Friday. Eric's Oncologist had mentioned maybe starting a round of IV Chemo, which is 5 days, on Monday, so I mentioned it to the clinic doctor Monday morning, but nothing happened all day Monday so I thought they had decided against it and maybe we'd even be able to go home Wednesday or Thursday. Then, Monday at 4:40pm the clinic doctor told me that they'd be starting the 5 days of IV Chemo the following day. I asked him if we could start it that day so we could still go home on Friday, instead of now making us stay until Saturday, which seemed completely ridiculous. He went to check, but came back and said the decision hadn't been made until 3:30/4pm and it was too late in the day. I was really upset and went to talk to our Nurse Practitioner and was crying by the time I got to her. She gave me a big hug and told me the chemo techs go home at 4pm, but she would check the following day and see what needed to be done for us to go home and come back for the chemo as an outpatient. Before she left for the day, she had emailed me a list of those items. 

The following day, Tuesday, they did start the IV Chemo and Infectious Disease came by with amazing news: the susceptibilities test was back and the infection IS susceptible to the oral anti-fungal medication!!! This was actually on the early side of the 2-3 weeks so I hadn't been expecting to hear so soon. Eric's Oncologist came in the afternoon to go over a plan for us. We were still waiting to hear if the oral anti-fungal was at a therapeutic level in Eric's bloodstream, but his Oncologist was okay to stop the IV anti-fungal anyhow. He also said that Eric could do the inhaled anti-fungal as long as he was in hospital, but didn't need to do it beyond that. He said we'd be able to go home late Wednesday or sometime on Thursday; that they just needed to monitor Eric's electrolytes now that he was off the IV anti-fungal. 

On Wednesday the clinic doctor said that Eric's potassium had increased substantially. He wanted to take Eric off the fluids with added potassium and then monitor his electrolytes so said he would like to keep us one more night. I said that was fine, but asked if we could have discharge by noon on Thursday. Sometimes they discharge late in the day and I hate waiting all day just to sit in traffic. The doctor came back late afternoon and said everything looked good for noon the following day and he'd sent the prescriptions to pharmacy already. 

Thursday morning Eric had 2 nurses, a seasoned one and a trainee. They were still in the midst of their morning stuff when the doctor came in. He told me that Respirology was uncomfortable with us leaving. They didn't want to stop the inhaled anti-fungal, but in the previous 3 weeks, had taken no steps to make it available to us at home. At least they also didn't think it was reasonable for us to continue to stay in hospital for another 3 weeks just so that Eric could do 6 weeks of inhaled anti-fungal. Their alternate solution was to do a bronchoscopy so they could take a look and see if things are improving, as they appear to be, and potentially do more debridement if needed. They were going to try and get Eric on the OR schedule for the following day. So we waited, and waited, well past that noon discharge time. Eventually, the Respirology fellow came to tell me that they weren't able to get Eric on the OR schedule for the following day, so we could go home. She said they would get him on the schedule for next week, and we'd get a call the afternoon before to let us know. I said that was fine, but Eric was starting a new school next week, so it's important that he starts with his peers. She agreed with me and left the room. I started packing up our stuff and got ready to leave before anyone could change their mind again and tell us to stay. This was 4 weeks to the day from when he'd been admitted. 

We got home at about 4pm and it was amazing!!! Eric was a bit emotional at finally being home after over a month. At 6:30 I got a phone call from the Oncologist on service for the week. She told me that it turned out that Eric WAS on the OR schedule for the following day at 1:30pm. She said they hadn't told Respirology that he'd been discharged so we'd just call this an overnight pass and could we be back at 9am the following day. Oh, and they wanted Eric to stay overnight after the procedure. What a kick in the pants. It's actually worse to get that little taste of freedom and have to go back, than to just have stayed the extra 2 nights. Eric was so upset and at bedtime asked when he can tell Respirology they suck and made a child cry. 

Friday morning I woke up to an alarm so I had time to prep to go back to the hospital and woke Eric up so he had a bit of time to enjoy home before heading back to the hospital. I was sitting on the couch just after 8am when I got a call from our Nurse Clinician. She asked if we were still at home and I said yes and she said good, stay there until we hear back; the procedure doesn't appear to be confirmed. I continued to prep but waited to hear back. Just before 9am I got a call from the Oncologist that I had spoken to the previous night. She apologized profusely, said she didn't know how this happened and that their internal communication has been unacceptable in the way that it affected us in the past 24 hours, but that Eric was not in fact on the OR schedule for that day. We still had to go into the clinic for day 4 of the 5 days of IV chemo, but it was a quick in and out. Uncle Jon came with us since he and Auntie Becky are visiting for the weekend. In clinic, Eric's Oncologist was almost as annoyed by the chaos as I was and even gave Eric permission to yell at respirology. Additionally, he said that he did not require Eric to stay overnight following the procedure, as we had initially been told. It is possible that we will have to, if Eric needs oxygen after the procedure, but it is not a requirement if everything goes smoothly. Finally, he told me that Eric is on the OR schedule for Tuesday morning. At 10:15. His school that day is 10-10:30. Initially I was going to say no, that they needed to reschedule, but I talked to Eric and his first day of school is only 30 minutes out on the field in their teams, but they are not in their assigned classes yet, so we thought he really wouldn't miss anything and it was best to get it over with.  

Saturday morning we had to go in to the hospital, outpatient treatment in the inpatient ward, for day 5 of 5 of the IV Chemo. Unfortunately, the ward is absolutely packed with not a spare room to be had. It's been like this the past few weeks so they had a bed set up in the teen lounge for Eric. Both Auntie Becky and Uncle Jon came with us this time. Another quick in and out, but this time Eric was able to be de-accessed, and stay that way, for the first time in 4 weeks and 2 days!!! He was so happy! Saturday afternoon Eric had big plans for Daddy to take him to Treasure Chest so he could get some new YuGi-Oh cards. He came home with a large bag and a big smile! 

Sunday morning Eric was relieved to have the day completely free, finally! He's only got Sunday and Monday free, but he's enjoying every minute of being at home! Tuesday, we're back to the hospital early for a platelet transfusion, prior to heading to the Procedures (OR) floor for the bronchoscopy. Hopefully, Eric will be at school on Wednesday with his peers 🤞Joel is starting a new school next week as well, so wish us luck! This is a lot of change all at once.