Week of Oct 25

It's been yet another rough week, and, spoiler alert, Eric did not make it home for Halloween. 

Last weekend Eric started to retain fluids, all the fluids! They measure everything in and out here, and by the end of the weekend he was positive 9.3 liters of fluid - he'd taken in 9.3 more liters than he had put out - and his weight was up 6 kilos from fluid. He was very swollen and uncomfortable and it was difficult for him to move around or even to get comfortable in his bed. They give him a diuretic to get that fluid off, but it wasn't working as well as it usually does, so they kept giving bigger and more frequent doses. By Friday, he was still a little over 5 liters positive, but when I came back on Sunday, he was noticeably less swollen and his weight was down 4 kilos; he had actual feet again, instead of balloons! There is still a bit more fluid to get off, but this is a great start. 

Also over the weekend, Eric started to need oxygen to maintain his oxygen saturation. He has nasal prongs to get a continuous flow of supplemental oxygen, but it is at quite a low rate since he only needs a little bit of additional support. This may be a result of the additional fluids, as some of that will be sitting on his lungs. The oxygen keeps him attached to the wall, so again, very difficult to move around. 

On Monday, Eric's Oncologist was the Attending responsible for the ward so we got to see him. He started Eric on a 5 day cycle of IV chemo, as planned. Additionally, he wants to figure out the headaches, so ordered an MRI of Eric's head and a Lumbar Puncture (LP). He also wanted to check in on the fungal infection, since I think it is the reason for the fevers, having ruled everything else out, so he ordered a chest CT. MRI was ready for Eric for an un-sedated MRI on Tuesday; however, Eric was so uncomfortable from the swelling that he said there was no way he could lie still in the MRI machine. Luckily, they were able to give him a sedated appointment for the following day. Since he was already downstairs in Radiology, they did the CT just before the MRI. 

We got the CT results later that day and, unfortunately, the fungal infection has worsened in Eric's lungs since the last scan about 6 weeks ago. This could be another reason, in addition to the fluid, that Eric is requiring oxygen. Eric's team consulted with Infectious Disease and they've recommended restarting the IV anti fungal, in addition to the oral anti fungal that he is already taking. I have also asked them for a follow up bronchoscopy since that is the only way to see what is happening in his trachea, where the fungal infection was at it's worst. ID had recommended a repeat bronch about 6 weeks after the last anyhow and that is about where we are at. We have a follow up appointment with Respirology next week, so we might not get more info about a bronch until then. 

We didn't get the MRI results until the following day and I was kind of freaking out, but there is no change from his last MRI. Of course, this also means no explanation for the headaches, which is both good and bad news - we'd like to know why, but a brain-related explanation may not be a good thing. 

Eric had no trouble with the IV chemo through the week, but his blast count did continue to rise. Since it will take time for the IV chemo to start working, Eric's Oncologist added an oral chemo back in. However, his blast count still rose to a high of 22 on Saturday before starting to fall a bit on Sunday. 

Eric had increasing pain throughout the week, and it was already bad to start, which we initially thought was due to swelling, but could also be attributed to the higher blast count. He's on a number of pain medications and his pain is still not well controlled, which has been causing him difficulty sleeping as well. Since he's feeling so poorly, he hadn't been building Lego, even though I made sure to get some sets to keep him occupied for our stay. Uncle Jon visited on Wednesday afternoon on his way back to the airport from a couple days of meetings downtown and brought Eric a Lego set. It was only after he left that Eric finally felt up to building Lego, which I took as a really good sign. He has also been gifted some Pokémon packs which are a definite mood booster!  

With everything going on, Eric could not be discharged on Friday to celebrate Halloween at home and he couldn't even have a pass to go home for a few hours due to the oxygen and continuous infusion of pain meds. The hospital had a lot of Halloween activities on Saturday, and the T8 inpatient unit had trick or treating on Friday afternoon. Eric put on his Halloween costume and he and I went out for the trick or treating, which was really challenging with a wheelchair and a giant IV pole. Unfortunately, Eric wasn't into it at all and when we got back to the room he said it was almost worse because it just reminded him of what he was missing at home. We both cried and then I drowned my sorrows in Halloween candy. 

Chuck came to the hospital Friday after work to stay with Eric over the weekend so I could go home for a break and to see Joel and Millie - one of them was VERY excited to see me. The other one probably was too, just not quite as expressive about it! I came back on Sunday to a very cranky Eric. He is so tired from not sleeping well, uncomfortable from spending so much time in his bed, and still in a lot of pain. 

Next week I am hoping they can get him into surgery for a bronchoscopy, plus they plan to do an LP. Additionally, while Eric is sedated, they are going to insert an NG tube for tube feeds. This will give him the nutrition he needs and keep his digestive system engaged, while bypassing motivation, taste, texture, etc. Eric has had an NG tube in the past and HATED it, so he said no to the "nose tube" repeatedly throughout the week, but finally reluctantly agreed, only if they put it in while he is sedated for another procedure. He is currently still getting TPN, the IV nutrition, but they have not been able to optimize it due to some of the other challenges he's having. 

Unfortunately, the fungal infection requires an immune system to treat but in order to treat the leukemia blasts the medication wipes out his immune system. It is a really, really difficult situation and both conditions are life threatening. We have no idea when Eric might be discharged, but I would be surprised if it was this week. 

Week of Oct 18

Perhaps I needed to count my blessings last week rather than saying "what a week" because I fear I jinxed us.  

Eric had a great time at the Pokémon card show Saturday morning, but then needed the rest of the weekend to recover. He was exhausted! 

He had planned to go to school on Monday and even had his lunch and backpack packed and ready to go, but he didn't feel well enough when he woke up. He really wanted to go though so said he would go at nut break, but still not feeling well enough, so maybe lunch, but again, nope. The poor kid has been feeling really poorly for weeks now. I keep thinking its going to get better but it doesn't.  

He was up late Monday night after vomiting around bedtime, but still needing to take his meds, so he didn't even want to be woken up for school Tuesday morning. When he did wake up Tuesday morning, he was happy just to curl up on the couch. Mid morning I got an email from Starlight Children's Foundation offering tickets to the Bruno Mars concert that night. Eric and I had been listening on the radio and trying to win tickets, so I couldn't pass that up! With Eric not feeling well, I knew it was going to be tough for him, but he really wanted to go, so we decided we could push through with pain and anti nausea meds. Unfortunately, we had to be at the hospital early Wednesday morning and knew it would be a late night. We asked Granny if we could stay at her house in Vancouver and, of course, she was happy to have us. We parked there and uber'd downtown. We didn't care too much about DJ Pee Wee so we arrived late and there was no line up to get in and the concourse wasn't busy. We got to our seats which were pretty decent; they were the club seats, right in front of the boxes. It gave us a great view and I couldn't believe how many people they fit in that place. I've never been in BC Place with floor seating before, only BC Lions or a General Admission concert. The host said it was almost 50 thousand people! Eric stayed in his seat, but sent me in search of mini donuts. Eric was so excited for his first concert and was just taking it all in. However, when Bruno Mars came on stage, everyone stood up, and stayed standing! Of course they did; why didn't I consider this in advance? There's no way that Eric could stand for a 2 hour concert, but even if he could, he isn't tall enough to see over the adults in front of us. He was so upset that this wasn't going to be the magical first concert experience he had been excited for. His disappointed face broke my heart and I knew I had to do something about it. I went to talk to the Host to see if there was anything she could do. She told me she'd talk to her supervisor and get back to me. After about 20 minutes, she came to get Eric and I. Her supervisor was there with new tickets and another employee with a wheelchair to take Eric to our new seats on the other side of the stadium. They put us on the accessible platform for wheelchair users and their companions. There was only one wheelchair there so they gave us a couple of chairs and it was perfect! Eric could see the whole concert from a sitting position, plus we were a little closer than our previous seats. I can not say enough about how kind and accommodating the BC Place staff were; they were absolutely wonderful and it was them who made this night for Eric. He was so happy, huge smile, and singing along to his favourite songs. The concert was pretty great, but that smile on Eric's face was everything for me. We haven't seen it in awhile. 

 

After the concert we were waiting for a wheelchair pick up from our seats and they had a lot of pick ups that night, so we waited quite awhile, but we were pretty happy. We were the only non-employees left in the stadium and were watching the employees clean up and basking in the glow of the concert. We eventually made it out of the building and no surprise that getting an Uber was a bit painful. I actually managed to flag down a taxi while waiting for Uber to find us a driver. We got back to Granny's and tucked into bed by 12:30am. The alarm was set for 8am so we were able to get a bit of sleep. Thank heaven for Granny! Otherwise we would have had to leave Coquitlam at 7:30am, and probably would have only got 5 hours of sleep! 

Wednesday was a big day at the hospital because we had to start in Respirology. We were there about an hour and a half as they did multiple breathing tests with Eric. From there we went to our T8 Oncology Outpatient Clinic. They accessed Eric's port, did bloodwork and started his platelet transfusion. We got his whole team for a visit: Oncologist, Nurse Practitioner and Nurse Clinician. They all wanted to hear about the Bruno Mars concert. His Oncologist wanted to stop both of Eric's oral chemos since his blast count had come down to a tolerable (as if there is such a thing) level and had completely wiped out his immune system in the process. I learned that his ANC (absolute neutrophil count) was 0.1 and was so glad that I hadn't known that the day before when I took him in a stadium of 50k people. His Oncologist wanted to back off the chemo to allow his immune system a chance to rebound and continue fighting the fungal infection. He also suggested that we think about coming into hospital, inpatient, next week Monday to Friday to do a round of IV Chemo and at the same time we could address some other issues, such as the continued headaches and Eric's weight. Since his PICU stay in August, he has lost more than 6 kilograms, which is over 13 lbs. His face is still round from the medicine, but his body is skin and bones. I knew this was becoming a problem and had planned to ask to speak with a dietician at that appointment. Eric's Oncologist had me convinced to come in next week, but I was still planning to go home and talk to Chuck and Eric. His platelet transfusion finished and his nurse did vitals, as they always do at the end of a transfusion, and his temperature was 38.8. We were so close to sneaking out. Anything over 38 is considered a fever and because he has no (0.1) neutrophils, he had to be admitted. Granny came and sat with Eric while I zoomed home to get our stuff for a hospital stay. It was rush hour though, so not as much zooming as I would have liked. I got back a little after 5 and we were told they were cleaning a room for Eric on the inpatient ward. Unfortunately, it is still really full so they actually had to move someone else to a different floor to make room for Eric. It's bittersweet that he has priority over someone else on this floor. I'm glad to be on T8 where we know the routines and the people and where everything is, but I'm not happy that he's ill enough to bump someone else. At least they bumped someone out of a room that had a fold flat parent bed; it's the little things. Eric wanted his favourite Bugs n'cheese from Boston Pizza so we ordered that and he ate a little, so he has leftovers for the next day. They did put Eric on precautions (isolation) but when the nasal swab came back negative - second one in 8 days - and with no symptoms beyond fever, they let us off isolation. Thank heaven. It makes all the difference to how painful our hospital stay is whether we can leave the room or not. 

We had a great sleep Wednesday night after being a bit short on sleep Tuesday night, but Eric woke up Thursday feeling quite nauseous and headache-y. He had an ECG and then got both blood and platelet transfusions since both were low, even with a platelet transfusion the previous day. He also got a magnesium infusion because his magnesium was low. I discussed with his inpatient doctor about Eric's weight loss and not eating and saw the dietician again. We decided to add TPN, which is nutrition through IV, to try and get on top of this weight loss. The doctor's are definitely thinking that some of these symptoms could be related to the lack of nutrition. Unfortunately, it does take 5-7 days for the TPN to have an effect, so we're here until next week and since they still want to do the IV chemo next week, we are here until Friday. After a bit of a rough day, with headache and nausea, Eric was ready for bed just after 8pm. I had hoped he could just get a good night sleep and we could start fresh with a better day on Friday. 

Unfortunately, pain, mostly his head but now also his left shoulder, kept him awake on and off through the night. We had one of the worst night sleeps ever! Friday morning his platelet count was still low after transfusions 2 days in a row, so another platelet transfusion was ordered. Additionally, the doctor ordered an abdominal ultrasound and chest x-ray just to check in on the fungal infection, and increased his pain meds. After the ultrasound and chest x-ray he was in quite a bit of pain. He had a few doses of pain meds and then was able to sleep most of the afternoon. The dr came back and told me the ultrasound and chest x-ray were pretty much the same as before. However, she had talked to infectious disease and was going to switch his antibiotic. Since Eric is immune compromised, they start an IV antibiotic any time he spikes a fever, as a precaution. They use a couple different ones, but after speaking with ID they decided to use something else to see if they can catch something brewing that is not showing up on the labs. After the doctor left, Eric's nurse told us that she had also ordered another nasal swab, which she hadn't told us. Apparently this was just to be sure they weren't missing something; I guess the previous 2 were not sufficient! Of course, it was negative again. Finally they ordered Lasix, or as Eric calls it, the peeing medicine. It seems he's retaining a lot of the fluid they've been pumping into him with all these transfusions, which is causing his blood pressure to be higher than it should be, so they wanted to try and get some of the fluids off. It didn't seem to work that well because he only peed a couple of times and then we were able to get to bed. 

Our sleep was better than the previous night - it would be hard not to be - but was still fairly interrupted with lots of pain and Eric's pain upon waking Saturday morning was quite extreme. Additionally, his blood pressure is still high and now his oxygen saturation levels are too low and they've put him on oxygen. The doctor is attributing this to fluid retention. They calculate his fluid balance every 12 hours and he's positive about 2.4 liters, meaning he has taken in 2.4 L more than he has put out. Additionally, his weight has increased by a few kilos, and it's not because he is eating. He actually hasn't eaten any food at all in 2 days. She ordered a much larger dose of the peeing medicine and it did help get some of the fluid off in the morning, so she's going to do another dose this afternoon. Additionally, she ordered a continuous infusion of the pain meds because the doses he has been having are wearing off too quickly. His head is still really hurting but now his whole body is aching as well. At least he's not nauseous anymore. He was getting sick of the nasal prongs for the oxygen so I let him take them off to see if he can keep his oxygen saturation up on room air and he's doing okay so far. 

Chuck was going to come today, Saturday, and stay overnight, but with Eric so miserable he wants me here, and I want to be here to get some answers as to what is going on. (And yes, I know I need to take breaks, but this doesn't feel like the right time.) Chuck brought us a few things from home and stayed with Eric so that I could go vote at a nearby high school. I'm back now and Eric is resting relatively comfortably and we're settled in until at least Friday. Fingers crossed that they can sort some of this out and send Eric home in better shape before Halloween!   

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.