Update Week of March 15

Eric spent 7 nights in hospital and was discharged on Thursday morning. His blast count dropped from 9.4 to 1.1 by the time he was discharged. Unfortunately, he continued having the terrible headaches until early this week. He did not like the Coke, so I got him a Starbucks Strawberry Acai Refresher, which has as much caffeine in it as Coke. He liked that better but I'm not sure how well it worked. Mid week, he was finding his legs were getting restless from all the lying in bed, so once his head was finally improved, we went for a walk around the ward. It was the first time he'd been out of his room in almost a week. Later that day, we headed down to the family lounge to make dinner as a reason to get out of the room. However, Eric's legs started aching badly while we were in there. The leg pain continued for a couple days and we weren't sure if it was from walking or from something else. I told our Nurse Practitioner that I thought unexplained leg pain was par for the course around T8. She said that they like to try and explain it, but it certainly isn't the first time for Eric. Toward the end of the week, we had a visit from Olive, one of the pet therapy dogs. Pet therapy is a highlight of our visits to the hospital; Eric loves animals!  

We had flights booked to Prince George on Friday. I had booked them ages ago just to get a few days' break over Spring Break and to visit Grandma. It was touch and go through the week if we were able to go, but by the end of the week we'd got the all clear. Eric was given a platelet transfusion on Thursday before leaving hospital, but to be extra safe, his doctor suggested coming in to clinic on Friday for another platelet transfusion. I agreed, but Eric was very unhappy with this decision. It meant we would have to leave his port accessed for another day and he would have to try to find a comfortable sleeping position for one more night, this time at home. 

We got home Thursday afternoon and I got to cuddle with my puppy dog! It was so, so good to be home, but a little weird that it was only for one night. Eric had been having anti-nauseants around the clock at the hospital, while having the IV chemo, but once at home, he didn't think he needed it anymore. He is still having 2 oral meds for treatment, though they are considered targeted therapy and not chemo. Thursday night I did laundry so we could pack Friday morning. Just before noon, we headed into clinic and Joel was with us this time. We didn't have to be at the airport until 4pm, and yet this was Eric's fastest clinic appointment ever. His port was already accessed, they didn't do bloodwork and the platelets were ready to go when we arrived. Since we had some free time, we headed over to Granny's for a visit. 

At the airport we were able to get a wheelchair for Eric since it's quite a long haul to the gates for the teeny tiny planes that go to Prince George. Turns out that if you have a wheelchair, you get priority at security so that was handy. We had an uneventful flight and Grandma picked us up at the airport. We're having a nice, relaxing visit. Kristy and Emma came for a visit. Uncle Jon took the kids to Great White and let Eric choose a Lego set. 

We're back home on Tuesday and back to clinic on Wednesday. 

Update Week of March 8 + Biopsy results + Admit

It was another long week. Hard to believe they just keep getting worse. 

First, we did have one little bright spot. Our team wanted to cheer Eric up after the previous rough couple of weeks, so they arranged for us to have Michael Bublé's Superhero suite at the Vancouver Giants game on Sunday. Eric was definitely not 100% but he had a good time at the game and visiting with his friends. It was the first time he'd been out in weeks and I was just so happy he was able to leave him room and the house. 

Monday we were back to clinic where I got the results from the biopsy the previous week. The abnormal cells are approximately 80% and blasts are 20-30%. They didn't have the final result at that point, but a blast count in his marrow over 20% means he has AML (Acute Myeloid Leukemia) in addition to his original MDS (Myelodysplastic Syndrome.) These results are worse than the last biopsy just before Christmas, but pretty similar to the one before that. This was not a surprising result because I had been seeing the blast count in Eric's peripheral blood increase. 

I did already have the results from the Lumbar Puncture but I might have forgotten to share; the CSF (cerebral spinal fluid) was clear which was expected and is very good news. 

Eric's Oncologist said we needed to act or we would likely lose control at some point in the future, but hard to know the timeframe. He gave me a couple options for going forward, but was waiting on some approvals. He expected to have that by Friday and suggested we would likely start something different Monday. In the meantime we continue with the Revumenib because stopping would likely cause us to lose control faster. 

Tuesday and Wednesday Eric was home and still headache-y. He spent most of his time in his room in the dark. 

Thursday we were headed back to clinic. It was planned for that day to get us back to our regular schedule. Eric got his platelets and I went to talk to his team again. His Oncologist showed me Eric's blood counts and the blasts had almost doubled since Monday. He suggested we needed to act before Monday. He didn't have the approvals yet, but what he wanted to do was go back to the previous treatment: 5 days of IV chemo (Azacitidine/5Aza) plus 28 days of oral therapy (Venetoclax). This is the combo that put Eric into remission for about 9 months, but then stopped working as effectively. He suggested we start the following day, Friday, but since we were already there, I asked if we could just start that day. Unfortunately, since Eric had a significant amount of blasts, he wanted us to be inpatient for the treatment to watch for Tumor Lysis Syndrome, which occurs when blasts break down too quickly. Eric did end up being admitted Thursday and starting treatment that afternoon, instead of going home Thursday and coming back Friday to start treatment. I had not expected to be staying that day, but it was even harder for Eric because I had only told him that morning that he was going to have to start a new treatment. (Not to mention, him actually being the one having the treatment, obviously.) I'm usually very up front with him, but he just hasn't been feeling well enough to have a conversation about it. Chuck was able to come in the evening and bring us some stuff from home, like my mattress topper!      

Since Eric is still having the headaches, his Oncologist said he'd take advantage of him being here to do a scan. He had a "quick" MRI scheduled for Friday morning. It was non-sedated but Eric was such a champ. I guess after doing it once before, it is easy-peasy now. We loaded him up on pain meds before heading downstairs to MRI so he could be comfortable. Unfortunately, MRI wants patients in a gown in case there is metal in their clothing, and for some reason, the hospital only has adult sized gowns. Eric was livid. Putting it on and getting in bed and then transferring to a wheel chair and then a bed in MRI and then a wheelchair and then the MRI table and then all of that in reverse, was very difficult and uncomfortable. Eric wanted to burn the gown when we got upstairs and he was quite serious so luckily he had no access to fire. On the plus side, the MRI was clear. Again, no cause for the headaches has been identified. I still think its the flu, but I wish it would go away.  

Later in the day, Eric's Oncologist stopped by. He said that he did not get either of the approvals that he had applied for. One of them he didn't expect to get, but the other one he did. It was for BC Cancer to fund a new-to-Eric med. It has been used in breast cancer treatment, but there was recently a study published where it was used in China in combination with the 5Aza and Venetoclax that Eric started Thursday, in children with Eric's specific mutation. It was deemed "safe" and actually fairly successful. He said they are going to fund it internally though, so Eric will still get access to it. The way it is used is to start on Day 6 after the 5 days of IV chemo. It is an oral med so Eric will be able to take it at home, but they want to keep him for a bit when he first starts to monitor his response, though it is well tolerated. I had been planning to go home on Monday, Day 5, but I guess we'll be sticking around for a few more days. 

Today will be Day 3 of this new round of treatment. Eric's bloodwork is looking good. The blast count has come down substantially and there is no sign of TLS. Unfortunately Eric is still having headaches so he's pretty miserable. He's got all the pain meds, but the sunshine is not helping. The room is quite bright even with the blinds down. The doctor today actually suggested we try a little caffeine to see if that helps, so I'm going to go get him a coke from the vending machine. He's never had coke before so I hope he likes it. 

Update Week of March 1

We were planning to be at clinic M/W/F this week, but that didn't work out. Despite that, this week hasn't been any shorter than last week. It was Thursday we learned Eric had the flu. He was so, so sick on Thursday and Friday with fever and head pain. He just lay in his bed sleeping on and off. 

Saturday morning his head still hurt, but no fever. By the end of the day, he seemed much improved over the previous days. Though his nose was bleeding ALL DAY. He had a couple of doses of TXA and it would stop briefly, but just start again. We knew he didn't have any platelets because Wednesday evening in the ER they were only 25 and the fever seems to make his body burn through them quickly. We had talked about going into the ER to get a platelet transfusion. Eventually on Saturday evening Eric decided it was time to go. His nose had stopped bleeding at that time, but we didn't think he would be able to wait until his appointment Monday. I called the Oncologist on call and she gave the ER a heads up that we would be coming in. When we arrived at the ER, Eric vomited a substantial amount of blood. Luckily, it was not because he had an internal bleed; it was from his nose bleeding all day. It was DISGUSTING. His nose had not started bleeding again, so I don't think they were in a huge rush to get to Eric, but we didn't wait too long to see a doctor. We had never been to the ER for platelets, so weren't even sure if they did platelet transfusions there. The ER doctor said that they can do platelet transfusions, but it had to be 1:1 nursing and they were too busy that evening to be able to do that so we would be admitted. Ugh! Just before 1am, we finally made it to a room upstairs on T8 and the platelet transfusion started before 2 am. We both fell asleep shortly after the platelets started. Eric's nurse came in at 8am for vitals and we both woke up but were able to go back to sleep for another hour. Shortly after 9am the doctor came in with discharge papers and we were able to go home. 

Sunday we were both exhausted, but Eric was again feeling a little better. He was finally actually hungry after not eating for a few days, and able to come to the table for dinner and had some lights on in his bedroom for the first time in days. We were able to skip the clinic appointment on Monday since it was for platelets and he'd got those over the weekend. Lucky we didn't have to go in that day because Eric slept in until 9am which is shocking for him. He still had a headache and his nose started bleeding again and he was so upset. He said he just wanted to feel better. His nose did stop bleeding fairly quickly and he did leave his room and hang out on the couch for awhile, but then he started to feel poorly again and didn't make it to the table for dinner. Tuesday morning he had his last dose of Tamiflu, but vomited again that evening. 

Wednesday we went to clinic for the bone marrow biopsy and LP (lumbar puncture.) We have to go in early for procedures so we left the house at 7:30am. Eric's nurse was new to T8 and she missed his port. Luckily a favourite nurse came in during the access and she was able to fix it quickly and hopefully not too painfully, but Eric was not impressed, obviously. He needed platelets before the procedure, but they took awhile to arrive upstairs. Eric was happy to learn there were only 3 people on the procedure list, since he had to go last because of the flu. Unfortunately, they started late and Eric didn't get in until 11:30. He was so upset for about the last hour and I was worried about how he'd wake up. Often if kids are sedated angry, they wake up angry. It was a problem for the first few years of Eric's treatment, so we try hard to be positive as he's going to sleep. We weren't able to do that this time, but luckily he still woke up fairly well. His hemoglobin was low so he had to get blood as well. We were there forever, and Eric was pretty grumpy, feeling miserable for most of it. 

Thursday Eric spent the entire day in his room in the dark. His head and jaw have been hurting a lot, and he's a little nauseous, but no more vomit. Friday he spent most of the day in his room in the dark, but I did manage to convince him to come out of his room for pizza and family movie after dark. Saturday morning he has again woken up with a big headache, but with some pain meds, he has made it to the couch early today. Even with the sun up, though it's pouring rain, so not all that bright.  

The original plan was to get platelets Monday and Friday and have the biopsy and LP Wednesday. However, since Eric ended up having platelets on the weekend and then on Wednesday, we didn't need the Friday appointment anymore. He has also had his port accessed 4 times in a week, so the area is feeling very tender and needs a rest. Though I count on our routine of Monday/Friday one week and Wednesday the following week to schedule appointments, Eric's online teacher and flights to PG at spring break, so we can't just swap to the opposite schedule. To get back on track, we will go to clinic Monday and Thursday next week and then Tuesday and Friday the following week.  

Weekly Check Up Wednesday, February 25

This has been a LONG week. Actually, Wednesday alone was a long week. 

Eric hasn't been feeling well since Saturday. Not terrible, but not great and headachey on and off. He is also having jaw pain which seems really random, but perhaps he is clenching his teeth when he sleeps. Tuesday he was feeling okay and we had a follow up appointment with the podiatrist and got the all clear on his toes! Unfortunately, Tuesday evening his headache was really bad and even worse Wednesday morning. I gave him some pain meds and that got us to the hospital but he said it really only took the edge off. His nose had also been bleeding since 8am so when we arrived at the hospital we were able to get the platelet transfusion right away. His nose was still bleeding a little after that so he was also given a dose of TXA. Then he was in agony with his headache again so he got pain meds. While all of this was happening, we got his blood counts back and were surprised to learn that his hemoglobin was 86. We had both assumed his hemoglobin was low and that's why he was having headaches, but 86 is not generally headache low. In talking with his team we decided to give a blood transfusion anyhow just to rule it out as the cause of the headaches. 

Eric fell asleep during the blood transfusion and I had a chat with his oncologist and nurse practitioner. Eric's been on this new treatment about 3 months now and it doesn't seem like it's working. His Oncologist wants to do a biopsy next week to check what is happening in the marrow. It is possible that the treatment is working and it is a decreased population of mutated cells that are very active throwing out a lot of blast cells. However, it is more likely that the mutated cells have not decreased and that's why we are seeing increased blasts. Additionally, his Oncologist wants to do an LP (lumbar puncture) because of the headaches. This is to rule out the cancer crossing the blood brain barrier. I am not concerned about that this time because Eric had an LP just before Christmas when he was having headaches and it was clear. 

Eric woke up just as the blood transfusion was ending and he asked for more pain meds, so had another infusion before being de-accessed. We finally were able to leave the hospital about 4pm and this time we got home about 5pm, unlike last time we left at 4 and it took us 1 hour and 50 minutes to get home! We are still not over that. Unfortunately, Eric vomited the second he walked in the front door. 

In the evening, Eric still wasn't feeling well so was resting in bed. I went to give him his meds and found his skin was burning up. He didn't want me to take his temp because we both knew he had a fever and he didn't want to go back to the hospital. Sure enough his temp was 38.4 and I told him I had to call the doctor. He was so upset. He said I could call, but he wasn't going. Of course the Oncologist on call told us we had to go in. We arrived at the ER a little after 9pm and went straight into a room because the Oncologist called ahead to let them know we were coming. We got a nurse who sometimes works on T8 so he is able to do the port access fairly easily. They took blood for the CBC and cultures and did a nasal swab. No one should have to have this many nasal swabs; they are awful! While lying in the hospital bed, his oxygen saturation levels kept dropping, sometimes quite low, so they put him on oxygen. 

They gave him a bunch of meds and when his fever broke and he was feeling slightly less miserable, he went for a chest x-ray. His current treatment is not an immune suppressant so he actually has a few germ fighting white blood cells. This means that we got to go home instead of being admitted to hospital. 

We got home a little after 4am but Eric woke up before 8am with a really bad headache. I gave him pain meds and he was able to go back to sleep for a few hours. I got a phone call from our team at the hospital and learned that the nasal swab came back positive for Influenza A, again! This is the same virus he had just after Christmas. We were given a prescription for Tamiflu, an antiviral, to help him fight off the virus. I hope it starts working soon because Eric is still quite miserable. He still has a fever, headache and jaw ache and has been spending his days sleeping on and off. 

Next week we are in Monday and Friday for platelets and Wednesday for the biopsy and LP. 

Weekly Check Up Tuesday, Feb 17 and Friday, Feb 20

I think I jinxed Eric when I said he was feeling no pain in his toes. Since he was feeling good and it was a beautiful day, we went for a nice walk around Halfmoon Bay. I don't know if it was related or not, but later that afternoon/evening, Eric was in agony over his toes. He was screaming with pain. I gave him a pain killer, but it took a long time to work. It was pretty awful, but he did wake up the following day feeling much better and hasn't had that kind of pain since. We enjoyed a beautiful and lazy weekend on the Sunshine Coast. As lovely as it is, it's always nice to come home to our own beds. 

Our week has been fairly uneventful. Tuesday Eric and I headed into clinic. Usually he would go on Monday for a platelet transfusion and with the extra day, plus the extra platelets needed for his toes, I was really worried he was going to have a bleed we wouldn't be able to stop. He'd had petechiae, which is a sign of low platelets, around his eyes and ears for days. Luckily, no bleeding and Eric got his platelet transfusion pretty quickly. Unfortunately, it was a tiny little bag of platelets, only 181 mls. They don't live that long, so not much point in giving 2 units, but his toes do need platelets to heal! We are back on Friday so hopefully getting 2 transfusions only 3 days apart will help. The appointment was quick. We saw Eric's Nurse Practitioner, but nothing to report. It was a pretty routine appointment. 

Wednesday and Thursday Eric chose not to go to school because his toes are too sore to wear shoes at school all day. 

Friday morning Eric's toes looked quite improved. His team had ordered an ECG so we left a few minutes early to sneak that in before his appointment at the Oncology Clinic. When we got to clinic we learned that his platelets were already ready! I don't know what happened that they are sending them without a platelet count this week when they wouldn't the last few months, but I am not asking, just hoping it continues! The platelet bag was a nice and juicy 289 mls which is much more normal. Eric's Oncologist and Nurse Practitioner came by for an exam and a chat, but not much to report. Everything seems pretty stable right now, but we're still hoping for improvement. Eric's NP confirmed his toes were less swollen and less red from when she'd seen them Tuesday. We were out pretty quickly since the platelets were ready early and got home a little after 1:30pm. Even with a quick day, I find the drive and the hospital exhausting, and passed out for a nap as soon as we got home. 

Next week, Eric has a follow up with the Podiatrist on Tuesday and we're back in clinic on Wednesday.  

Here's a pic of the boys on the ferry last week: 

Weekly Check Up Wednesday, February 11

Today I am updating from the beautiful Sunshine Coast where we are, all 4 of us plus Millie and Granny, spending a relaxing long weekend. 

Eric went to school all day on Monday which was really nice (for me) after he only made it 2.5 hours all of last week, but he was very tired when he got home. Tuesday he woke up not feeling great; he had a stuffy nose and a headache for most of the day.

Wednesday morning we headed into clinic. Eric's hemoglobin had been 98 on Friday. Nowhere near the 80 where he would need a transfusion, but with the headache all day Tuesday and only making it through 15 min of his swim lesson Sunday due to headache and shortness of breath, we thought there was a chance he would need blood. We decided we'd better pack extra food and entertainment, just in case. Since Eric had a stuffy nose, we thought we'd be cautious, for the rest of the kids and staff on T8, so he was put on precautions. It is not as bad at the outpatient clinic because I can still use the kitchen there. His platelets were 6 and his hemoglobin was 86. Eric doesn't usually get symptomatic until 80, but we decided to do the transfusion anyhow because he had a headache the day before, didn't want to have a headache while we were away for the weekend and due to the long weekend, he isn't back in clinic until Tuesday. Two transfusion make for a very long day though. We were at clinic for 6 hours, leaving at 4pm and prepared for rush hour. We hit Starbucks on the way out to get Eric a snack (a grilled cheese) and me some caffeine for the trip home, and thank heaven we did. There was an accident on the highway, again, so we took an alternate route, but apparently so did everyone else. It took us 1 hour and 50 minutes to get home. It has never taken that long. We got home just before 6, and Eric can't eat after 6 because his med for this treatment has to be taken on an empty stomach. Luckily he'd eaten that grilled cheese on the way home and he grabbed an ice cream sandwich when we arrived home and was pretty happy.  

Thursday Eric had an appointment at the podiatrist for his ingrown toenails, but had planned to go to school until recess. However, he woke up in the morning pretty tired from the previous day and decided not to go to school in the morning. We had a relaxing morning before his podiatrist appointment. It was just an initial visit for the podiatrist to take a look and then we thought we'd come back for him to actually fix them. The podiatrist didn't want to leave Eric in pain though and had time to fix them right then, so we went for it! He gave us two choices: for him to cut them so that they wouldn't be so bothersome and then come back every 4 or 5 weeks for him to cut them again OR he could remove a sliver of the nail and apply something to kill the root so they don't come back. Obviously we opted for option 2 so that Eric can be done with this and not have them bother him anymore. The worst part was the freezing and Eric did scream when the needle went into his toe, but he couldn't feel anything after that. The doctor wrapped his toes in huge red bandages that we are not allowed to call "clown toes" hehe. 

He had to wear those until the following evening and now we have to do epsom salt foot soaks at night and antibiotic drops and bandaids in the morning. It doesn't even hurt and he's so happy to have it done. 

Friday we decided that Joel didn't need to go to school so we could take an early ferry after Eric finished catching up on math with his online teacher. The sun is shining and we're looking forward to the weekend ahead on the Sunshine Coast. 

Weekly Check Up Monday, February 2 and Friday, February 6

Joel is 14! And he just keeps growing - 5 feet, 10.5 inches now! He had friends over Saturday afternoon to play video games. They were loud, but it actually wasn't as scary for the rest of us as it sounds. We locked them in the basement and threw food at them. They were happy and left us alone. Sunday, Joel's actual birthday, he chilled in his pjs all day until we went to dinner with family to celebrate him. 

Monday, Eric and I went to clinic for his check up and platelet transfusion. He had a little nose bleed while we were waiting for his platelets. Since it wasn't bad at all and stopped fairly quickly, I assumed he must have some platelets. His Nurse Practitioner came in and said oh another of Eric's regular nosebleeds and I said no, this isn't normal, it isn't bad at all! She also confirmed that Eric's platelets were less than 5, so it is quite surprising, and lucky, that his nose bleed wasn't bad. She was very excited about the results of Eric's PFT. His lung function is up to 99%! His last test was quite awhile ago and was 90%. This is amazing after his pulmonary GVHD had him down below 50% with a chronic cough. He was treated for this with high dose IV steroids back in the summer of 2023, but we weren't seeing any improvement. Then, out of nowhere, it started getting better in the fall of 2023.

Tuesday Eric was feeling too tired to go to school. Wednesday he went to school, but I got a call at 11:10 because his head was hurting a bit. Thursday he was feeling a bit nauseous in the morning, so didn't go to school. All in, he was at school for less than 2.5 hours all week. 

Friday we headed back to clinic for another platelet transfusion. It was a pretty long and frustrating day. Transfusion Medicine still won't send the platelets without a platelet count and even though the bloodwork was sent to the lab STAT, it took them almost 2 hours to return the platelet count. We had been there 3 hours, just waiting, before the platelets showed up. They run for an hour, then a flush and de-access. We left the hospital a little after 2pm, 4 hours after the appointment time, only to find there was an accident on the highway. 

Eric's Oncologist stopped by during the appointment for an exam and to chat with us. Eric had only one question for him, that was more of a shouted statement - TOE! He gave me the go ahead to reach out to a podiatrist, so thank you for the recommendations Megan and Emma; we will give Coquitlam Podiatry a call on Monday. He also had the results of the bloodwork last week that was looking for the NUP 98 rearrangement. These are the dysplastic/abnormal cells that mark Eric's disease. They are 71% in his peripheral blood, which is the same as they were in his marrow at his last bone marrow biopsy just before Christmas. This is an improvement from the 80+% that it was before this treatment, though obviously not enough of an improvement. The doctor said in the trials it took 3-6 months, but also mentioned that he was thinking about next steps. For now, we keep doing what we are doing. Eric is "well" even if he's completely dependent on platelet transfusions and losing his tolerance for spending as much time at the hospital as we do. 

Now for the good news! We were given tickets to Collectopia, a trading card event. There were other cards, but it was primarily Pokémon. Eric was so excited that he had trouble sleeping Friday night! Saturday morning he had his backpack packed with his binders (to trade) and his wallet (to buy) and we picked up his friend Misa, who is also a huge Pokémon fan, and headed downtown. Starlight Children's Foundation had a table there and they took our coats for us and gave us lunch and the kids a stuffy. Starlight is the best! The kids were mostly interested in the vendors so we spent most of our time in there buying and trading cards. Not me for the buying and trading; my job was to hold things and stand by patiently. While in the room with the vendors, Eric saw Deep Pocket Monster. Apparently he is a famous YouTuber (Pokétuber.) They got cards signed and I took their picture with him. We also checked out the museum where we saw Pokémon cards under glass that were worth millions of dollars, as well as the original art work for the Black Lotus Magic card that is worth $20 million!!! In the museum, I took their picture with an Arceus statue. I didn't know who it was which is apparently quite embarrassing since he's the god of Pokémon. 

Eric said it was the best day ever and he'd go back today if he wasn't broke! He spent all of his Christmas money, but is very pleased with the cards he added to his collection. 

We're back at clinic Wednesday and we should get the results of split chimerism then.