Week of May 17

It has been a fairly uneventful week, which is what we like! Eric was tired Tuesday morning and stayed home from school. We went to clinic on Wednesday and it was pretty straight forward, but Eric got overwhelmed early on and a bit cranky. He had 2 nurses because one was new to the clinic. He's actually a nurse we've seen in the ER a few times, and also on the inpatient side of T8. However, he has never worked in clinic so he had someone shadowing him. So they were in the room for awhile to do the access and bloodwork. As soon as they left, an ECG tech showed up, and as soon as she left Eric's Oncologist and Nurse Clinician showed up. Everyone of these people wanted to poke and prod Eric and he was done! 

Having an ECG is not a regular event for a clinic visit, but everything else is. That was Eric's 4th ECG since he started this new med 2.5 weeks ago, so he's also done with ECG. I told him if they are going to make you do something so often, at least it's easy. For an ECG he can continue to lay on his hospital bed and watch his iPad. They just put some stickers on his chest and connect wires to them and the whole thing is done in about 2 minutes. Eric's Oncologist has ordered so many because this new med can cause long QT which is basically a longer gap between beats. It seems like all these meds can cause this and he has been monitored for it before. As of Friday, the ECG looked great, but Wednesday's did show "borderline" QT so we do need to keep a close eye on it. The dosing of this med is a bit different, so that Eric takes 1 tab for 5 days and then 2 tabs for 5 days and then repeats. This is because his dose is actually 1.5 tabs, but you can't cut them. This last ECG was after 5 days of 2 tabs, so Eric's Oncologist is hoping that after another 5 days of only 1 tab, the ECG will be normal again. 

After all that poking and prodding, everyone left Eric alone. He got his platelet transfusion and his doctor reviewed the bloodwork with me. The liver inflammation is down again, though only a little this time, but the best news is: blasts are down to 0.7!!!! I mean zero would be great, but not 9 is also amazing. It seems like this new med is working 🤞🤞🤞 We don't know for how long, and while we have started steps toward transplant, it seems like we're going to get a little breather. 

On Thursday, Eric went to school for a half day and was recognized at Baker's May Recognition Assembly for his positive attitude 💖 

It is Friday morning and Eric and I are enjoying a nice slow morning. Tomorrow we are going to Granny's to celebrate the May birthdays and Sunday we are free!

Back to clinic Monday and Friday next week. 

Week of May 10

Eric and I have caught a little cold. Luckily it's quite mild, especially for him. I had a nice and relaxing Mother's Day, while Chuck worked his butt off. Eric entertained me - and himself - by eating an apple like a goofball.

Eric had a platelet transfusion on Friday, so usually his clinic day this week would be Wednesday, however, since he started the new medication/treatment on Friday, the team wants to keep a close eye on him, so we had to go in on Monday. Since he didn't need platelets or his port accessed, we had to go to the blood lab first and then to clinic. Eric has been taking daily pain medication proactively because of the pain he was having the last couple of weeks. However, I forgot to give it to him Monday morning, after being away and out of the routine. He mentioned in the car that we'd forgotten but said he was fine. I asked him again when we got to the hospital and he still was fine. Blood lab went smoothly, though slowly, which is normal. In clinic, Eric saw his NP. She mentioned he was looking a lot better. His numbers were all good, including his blast count finally being down significantly. This could still be from the IV treatment finally working in his system, or from the new med or maybe both. We were only at the hospital a total of just under 2 hours and got home before lunch. It was nice to have the afternoon free. When it was time for Eric's afternoon meds, I asked him if he needed the pain med and he said "does it look like I need pain meds?" while dancing around the living room. My heart burst with joy. He said this is the best he's felt in weeks and it's definitely the best I've seen him in weeks, even months. Always the opportunist, I said if he was feeling so well, perhaps he should try a half day of school on Tuesday and he agreed. He was a bit nervous to go to school after being away for so long, but he made it the half day as planned. When I arrived at noon to pick him up, he had clearly had a very good morning and was grinning from ear to ear. 

Wednesday we went back to clinic for a scheduled platelet transfusion and also another check in to see how things are going with the new med. His blast count was down again and his liver inflammation still dropping. A good visit! Thursday Eric said he was too tired to go to school, but he's still feeling great. 

Way back when BC Ferries opened up their reservations, I booked a ferry to the Sunshine Coast and back for May long weekend, so that we had the option to go if we chose. A couple of weeks ago, I don't think we could have done it, but with Eric feeling better, everyone was up for a little vacay. The long weekend makes our clinic visits a bit challenging. We opted to go in on Friday, 3 days this week if you are counting. The idea was that Eric could get topped up with platelets before the long weekend and next week we can go back to our regular schedule, if all the numbers continue to look good. Clinic was pretty straightforward. Most of our team was away but we saw another doctor that we know well. Eric had an ECG to check in on his heart with the new med and it looks great. His blast count was up a tiny bit from Wednesday which I don't like, but I know Eric's Oncologist would say that it is not a statistically significant difference. His liver inflammation is down again. It has come down leaps and bounds this last week and is now close to the slightly angry that we've been tolerating for a year. Most importantly, Eric is still feeling great and is excited for a weekend on the Sunshine Coast. 

Our ferry wasn't until late, and visiting Granny's cabin is easy, so I was able to have a nap before packing. The family was excited to go, but I was exhausted. Between my mini cruise, 3 hospital days in one week and a cold, I was beat! However, I knew once we get to the cabin, it will be super relaxing. The ferry was uneventful and we got into the cabin just before dark. Granny wasn't available to join us this weekend, so it's just the 4 of us and the dog. The weather turned out to be beautiful on the Sunshine Coast over the long weekend, which I wasn't really expecting. We spent a lot of time relaxing, napping, playing family board games, poking around the beach, and we even toasted s'mores over a campfire on the beach. 

Back to reality (home) this (Monday) afternoon and back to clinic Wednesday. 

Week of May 3

As planned, we went to the hospital Saturday morning. Since the clinic is closed on the weekend, we got outpatient treatment on the inpatient ward which means a comfier bed for Eric and comfier recliner for me. Eric had to have his port accessed. He had numbing cream on and said at least the inpatient nurses are good at it (as opposed to the ER) but when it came time to access, he freaked out a bit. His nurse did a great job and the access went very smoothly. She did the bloodwork and platelets arrived quickly. Eric's Oncologist was working this weekend so he came by to review the bloodwork with me. Blasts were about the same and liver was slightly improved again. After the platelets, he had the chemo. This is a more intense chemo, but his doctor has ordered a low dose so it is actually done as an IV push over one minute. The whole time we were there, Eric was excited to go to Balding for Dollars and get a snow cone! It is a fun event with games, prizes, mascots, and food, but Eric's favourite part is the snow cones. We walked over and... no snow cones this year!!! Eric was so sad. He'd been looking forward to that for months. They did have ice cream, but Eric didn't like the flavour choices so he had a cupcake and then we left pretty quickly. It was very hot out and standing/walking has been difficult for him. He is having a fair bit of pain in his side and shoulder blade. It seems to be like the leg/groin pain of a few weeks ago, so his Oncologist thinks it is probably the blasts causing him the pain. Shortly after we got home Uncle Jon and Auntie Becky arrived from Prince George for a visit.  

Sunday morning Chuck took Eric to the hospital. Eric usually won't let anyone but me go with him, even his dad, if he has to be accessed. However, since he was already accessed from the day before, he was happy to go along with his dad. As long as we (Uncle Jon & Auntie Becky) didn't do anything fun without him. They were there a little over an hour. He really only needed the chemo on Sunday, but they were waiting for the bloodwork results. Eric's Oncologist needed to make sure everything looked good because if it didn't, he would be admitted. 

Monday morning Eric let Uncle Jon and Auntie Becky take him to clinic, since he was already accessed. His hemoglobin had dropped a little over the weekend, so he was planning to get a blood transfusion, in addition to the chemo, which made for a long day for them. It was amazing for me to get a day back and I puttered around the garden and the house all day. Unfortunately, Eric's blast count has not dropped, after 2 doses of the chemo and we had expected it to. Eric is still very ache-y and even woke up in the middle of the night from the pain. Grandma arrived via airplane mid-day and was able just to Uber to the hospital and catch a ride home. 

Tuesday morning I am back on duty. Grandma came with Eric and I to the hospital to keep us company while Jon and Becky took Millie out for a walk. Eric did suggest that Uncle Jon walk Millie and Auntie Becky stay so they could play on their iPads together. After getting platelets on Saturday, we were off schedule, so had planned ahead to get the platelet transfusion on Tuesday, along with the chemo. 3 doses of chemo and the blast count is still not dropping. It feels like this round of treatment is not working at all. As a stronger chemo he hasn't had in 3 years, I just assumed that it would work and that it would take Eric's aches and pains away, along with the blasts. It is extra hard to have your kid pumped full of poison when it doesn't even work. My pity party was short lived though because after clinic we went for pedicures with Grandma and Uncle Jon and Auntie Becky. It was Eric's first pedicure and, despite the picture where I surprised him, he loved being pampered. He and Uncle Jon got matching blue toenails. 

On Wednesday Uncle Jon, Auntie Becky, Grandma and MAMA (!!!) got on a cruise. It's just a wee little cruise; 3 days from Vancouver to Seattle to Victoria and back to Vancouver. But first...back to clinic for the last day of this round of IV chemo. It was a bit chaotic because Grandma was with me to head to the cruise and Granny met us at the hospital to take Eric home and look after the family for a few days. It was just bloodwork and chemo so we were done pretty quickly but had to wait for the bloodwork results before we could leave and the team wanted me to speak to another Oncologist who specializes in pain management. We had a good chat and she gave us a plan to help manage Eric's pain. The bloodwork arrived and finally the blasts had come down the littlest bit. 

Thursday I was docked in Seattle where it was quite warm in the sun so I hung around the pool and drank the best margaritas! Meanwhile Granny took Eric to the Lego store and spoiled him rotten. I know because he texted me progress updates. By the next morning, he had finished the 2000+ piece set. 

It seems like it was a good way to celebrate his first day off from the hospital after 6 days in a row there. I am also pleased that he was able to sit up and build that long. It seems like the pain management plan was working. 

Since I was still on the boat, and Eric had chosen to remain accessed, Chuck took Eric to clinic that day. First thing I got a text from Chuck about an antibiotic resistant bug they'd found earlier in the week. Luckily, while Eric was at clinic that day, he didn't use the affected washroom and they were able to clear him. That's the first time that has happened to us and it was terrifying, even though it was short lived. Eric had a platelet transfusion and his Oncologist reviewed the bloodwork with Chuck. Blasts were down a little more but liver slightly angrier. He was asked to reduce the dose of the oral treatment that we had increased a few days before. We also finally got our hands on the additional treatment that had been approved almost 2 weeks before. We'd been waiting to hear from the special pharmacy for awhile and of course I got the call as I was waiting in line for security and customs for the ship. Luckily they deliver directly to the house so Chuck was able to bring it in Friday to review with the Oncologist and Eric started it that night. This is the one that is supposed to treat the mutation that was recently discovered. Eric's Oncologist is very optimistic about it. Despite that, this last few weeks have been very tough and his Oncologist has started talking seriously with us about a second transplant. We may not be able to put it off much longer, but I am still hopeful this treatment will work and allow us to be in a better, more stable place than we have been recently. 

I arrived home on Saturday afternoon, just in time for Mother's Day on Sunday. During our time in Oncology land, I have learned that there’s no one way to experience this day. Some people are celebrating, some are grieving, some are holding hope, and some are just trying to get through. Whichever you are, I wish you love and healing today and everyday. 

Week of April 26

Our weekend was good. Eric scooted around a bit on his scooter, but the rest of the week has not been great. Eric has been lethargic and has lots of aches and pains. We went for bloodwork in the community on Monday, so his Oncologist can keep a close eye on the two big concerns we have at the moment: liver inflammation and blast count. Eric's Nurse Clinician called us on Tuesday to let us know the liver inflammation was slightly improved, but blast count had quadrupled in only 3 days. This explains why Eric was feeling generally poor. As a result, they asked that Eric start his oral treatment that day and suggested we pack our overnight bad to clinic the following day. We went into clinic on Wednesday and I was expecting the blast count to have significantly increased again, despite the treatment, since it was only one dose. His Oncologist came at the beginning of our appointment to let us know his thoughts. If the blasts were taking off, as anticipated, then he would admit Eric for a different chemotherapy that is administered by IV every 12 hours, to get the blasts under control. Luckily his blast count was actually slightly down from Monday, not enough to be statistically significant, but not up which is a win. Additionally the liver inflammation had decreased a little as well. We didn't have to stay, but they did ask us to come back again on Friday for another check in. In the meantime, his Oncologist asked us to double the dose of his oral treatment. That had always been the plan for this round, but with the liver inflammation it was not something we'd been able to do. 

We headed back in on Friday and since Eric had platelets on Wednesday, he didn't need them again, so no need to have his port accessed. Instead we went to the blood lab at the hospital first. Unfortunately clinic was packed and we waited in the hall for 40ish minutes before getting a room. We had hoped for a quick in and out and this was not it. At least the bloodwork results were back by the time we got a room. The liver inflammation was down again, and since Eric's now had 3 doses of treatment, 2 of them at a double dosage, that is actually really good. Unfortunately, his blast count hasn't dropped. His Oncologist says these numbers: 8/7/9 are essentially all the same and its making him nervous. As a result, we will be going back to the hospital tomorrow for IV chemo. He did say we could be inpatient and have the chemo every 12 hours or we could do outpatient and have the treatment only once a day. We have opted for that, but there will be a very low tolerance for admitting Eric. The Oncologist expects we will do this for 5 days, but we should see results in a day or two. Surprisingly, Eric's platelet count was only 9 today after getting the transfusion Wednesday. Eric said no platelets today so he will get platelets tomorrow as well. On the plus side, we'd been planning to go to the hospital grounds tomorrow for the Balding for Dollars event anyhow. 

While Eric hasn't been "well" for many years, he has been stable and able to enjoy a variety of activities. These couple weeks of instability have been very stressful, especially following on the heels of this latest virus. However, this rough spell has really been since Christmas. Eric has had 3 viruses during that time, plus changes in treatment all requiring hospitalization and generally leaving him feeling quite poorly. He's barely been able to go to school and is currently spending most of his time hunkered down in my bed watching tv or playing on his iPad.