Update Week of March 22

We had a nice trip to PG, but Eric didn't sleep well when we were there. He did fairly well, but was quite tired and a bit irritable. He seemed to be having headaches a little, but not too badly. I would give him pain meds for a headache in the morning and then he was fine the rest of the day. We came home Tuesday afternoon and it was Lily's first birthday on Wednesday! She is still crazy, but she's less crazy at her house than at our house where we also have Millie. 

Home on Tuesday and into clinic on Wednesday. It was a fairly quick visit: port accessed, blood work, platelet transfusion and home. Both Eric's Oncologist and Nurse Practitioner were away this week. We saw one of the clinic doctors that we know, but didn't have any questions or concerns. Sleep was better after one night at home and I thought we needed more time to see if that sorts itself out once home and headaches are milder to non-existent. Eric's blast count is down from 9.4 when we started the treatment a couple weeks ago to 0.6 now so that is a relief and should help him to feel better overall. Unfortunately, his germ fighting white blood cells have also completely tanked, as is expected with traditional treatment, but a change over the new one he was on before this. However, Eric is so, so happy that he is allowed to eat what he wants, when he wants. While taking the previous med on an empty stomach was possible; it was an additional complication that we really didn't need to deal with. 

We don't have any plans the rest of Spring Break, thank heaven! Eric has a birthday party to go to and hopefully he'll make it to swimming lessons on Sunday. He hasn't been in weeks!  

Next week we are back in clinic on Monday and then Thursday, because of the long weekend. 

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.