Week of April 12/Day 1-6 of 5

Eric is much more interesting these days than I would like him to be. Since having a medically complex child, I've learned boring is best! 

Monday morning Eric had a dentist appointment at the dental clinic at the hospital. He hasn't been able to have a cleaning due to the risk of bleeding and infection, but it is really bothering him so we are hoping to be able to arrange that soon. In the meantime, they had a look and did some x-rays. We saw a fellow there and she kept having to go ask her attending questions so it was sloooooow. We went from there to the Oncology clinic. We ran into Eric's Onc on the way in so he called the surgeon who came up right away. The surgeon was feeling Eric's port to see what to do. Unfortunately, surgeons are used to unconscious kids, and combined with needing a good feel of what was happening, Eric found it very painful. The surgeon did say the port still seems to be in the pocket it is supposed to be in, so if it can be accessed then we don't need to do anything, but if it is bothering Eric, they could do a revision surgery. Obviously, we'd like to avoid surgery if possible so this was pretty good news, but Eric is uncomfortable so he was wanting it "fixed." The port is not quite in the same place as before and Eric was really scared to have the access and also afraid the port might move again on de-access. It did hurt a fair bit, but the access was very easy for his nurse. Even though the bloodwork was sent STAT, it took TWO HOURS to return the results, which is insane, so then the platelets were finally sent up. After the bloodwork returned, Eric's Oncologist sat down with me. The blast count in Eric's peripheral blood was up to 2.4 even though he only finished this round of treatment 5 days ago, on Wednesday. His Onc thought we should probably not delay and start another round of treatment soon. With just a few minutes of discussion, we decided to start same day. This was mostly because Eric's port was already accessed and we could leave it that way for the 5 days of treatment, rather than de-accessing and re-accessing when he is really uncomfortable with it. Since his blast count isn't *too* high (relatively speaking) we are able to do the treatment outpatient, but Eric didn't want to. It had already been a long day and we were looking at driving home during rush hour and he just didn't want to deal with the daily back and forth. However, I was able to schedule the appointments for midday and its a quick infusion so I know we can go back and forth pretty quickly. Surprisingly, when we were finally able to leave, the drive home wasn't too bad, only an hour. We were home late and Eric had a rough day so I told him he could pick something for takeout and he chose KFC because he loves popcorn chicken. 

Unfortunately, before the food arrived, Eric vomited. Mid vomit he said "worst day EVER." It is unusual for him to be that nauseous with this chemo and with an anti-nauseant administered before the treatment, but it could happen. Only, then he vomited again and again and again. I tried to give him some Gravol in addition to the anti-nauseant he'd had before, but he just vomited it up. Eventually, it was almost 8pm and we thought we'd try to just put him to bed. Which is when he said that he was so cold, he was shaking, so I checked his temp and it was 39.7 which means we have to go to the ER. I called the Oncologist on call and quickly packed our overnight bag. It is usually already packed, but I had unpacked it to go to Prince George over Spring Break and never repacked it. We hit the car and were already halfway to the hospital when the Oncologist called back. They called ahead to the ER and we went right into a room when we arrived. Luckily Eric was already accessed because ER accesses are not fun. They took blood for cultures and started him on IV antibiotics right away. The concern is a potential blood infection, due to his port; this is a remote, but life threatening concern. He threw up 3 more times in the ER. I think it was about 12 times in 5 hours, but it did stop around 10:30pm. Interestingly, Eric's Oncologist had mentioned to me earlier in the day that based on Eric's bloodwork, his liver was a little inflamed, which could be due to a virus or possibly some other reasons. Sometimes it feels like he has a crystal ball. Since Eric does not currently have any neutrophils (germ fighting white blood cells) he was admitted. We got into a room on T8, the Oncology floor, about 1am, and settled into bed about 2am. 

After a good sleep in until 11am, Eric woke up feeling much better. Luckily, the blood cultures aren't growing anything and while most of the tests came back negative, one did come back positive for Sapovirus. This is one of the viruses that causes gastroenteritis, or what we commonly call the stomach flu. Even with Eric's symptoms, there was no reason not to proceed with treatment so he had Day 2 of chemo on Tuesday. He doesn't have much of an appetite but no vomiting or fever. He also had a blood transfusion Tuesday after they took all of his blood on Monday at clinic and again Monday evening in the ER. 

On Wednesday, Eric seemed to be feeling quite well, though still not much appetite. He is on contact precautions (isolation) so can't leave the room, and I am not allowed to leave either, unless I leave the floor completely. So far Eric has watched both Moana movies, both Frozen movies, 4 Toy Story movies plus Lightyear, and both Incredibles movies and he did complete a small Lego set. He had Day 3 of treatment and we had a visit from a surgeon and to Radiology. During the time we had been in hospital, Eric had been complaining of pain in his left upper thigh and groin, but on Thursday the pain increased significantly, even with a lot of pain meds. A surgeon came by to check for a hernia, but no hernia. He went for an ultrasound of the area to see if they could see anything, but it came back normal. Despite a day without viral symptoms, the night was very rough; all night Eric was waking up and rushing to the bathroom, again and again. 

Thursday, after very little sleep for both of us, Eric had Day 4 of treatment. Luckily the events of the previous night had at least stopped. Thursday morning Eric's Oncologist came to check on his leg and groin and sent Eric for another ultrasound. This time to look for a blood clot in the area, but that also came back normal. We were able to change rooms in the afternoon which was amazing! We had been in one of the rooms where the couch/parent bed doesn't fold down like a futon, and instead it was like sleeping on a park bench. So I actually hadn't slept much in 3 nights. Also on Thursday, there was some construction right outside our room where they are turning an open desk area into a closed office. We were pretty sick of the sawing and drilling and nailing by the time we got to switch rooms. 

Friday, Day 5 of treatment, and the day we are supposed to go home, right? Sadly no. While the viral symptoms are mostly gone and treatment is done, the leg/groin pain remains significant. In the morning Eric's Oncologist came by for me to sign some forms in an attempt to access the meds for the new mutation. He mentioned Eric would go to x-ray just to rule out bone issues as the cause of the pain since he has been on high dose steroids in the past which can cause bone problems. He also said that this virus, just like the flu, can cause body aches and pains, but it would be unusual for it to be just one concentrated spot. In the afternoon, Eric's doctor came by and said the x-ray was normal. She also said she would request an MRI, but that it was unlikely to happen over the weekend. By Friday evening, I think we have watched every Disney movie made in the last 30 years. Eric went over 6 hours with no leg pain and was able to start on another Lego set. At the beginning the lack of pain was due to pain meds, but it just kept on not hurting. I was very excited and may have jinxed him because sometime between 8-9pm it came back. He got some pain meds and eventually was comfortable enough to sleep, around 10pm. 

Saturday, today, is Day 6 at the hospital. A bonus day. Technically they are all bonus days since I had planned to do this treatment as outpatient. Eric slept in until 10am this morning which is shocking for him. Hopefully it helped his body heal. We don't have anything planned for today - no tests, no transfusions, no treatment. Our nurse this morning did say there was a chance he would get an MRI today, but on the weekend we could easily be bumped for someone more urgent. So far Eric hasn't had any pain or pain meds today, but shhh... I am not going to jinx it this time. We are pretty sure we are here for the weekend, but beyond that we just don't know. 

Today I am grateful for Eric feeling better, for tv and movies on demand and for a hospital couch/bed that folds down to accommodate my mattress topper. 

Update Week of April 5

Hard to believe the long weekend was only last weekend! On Friday I donated blood (have you donated blood recently???) and Chuck and the kids went to see the new Mario movie. Unfortunately, Eric had to come home about halfway through the movie due to the tummy problems he was having last week. Luckily, that turned out to be the last time he suffered from tummy problems. Saturday the Cops for Cancer were fundraising at Coquitlam Center with an 8 hour stationary ride so we stopped by to say hi. 

Eric was also very happy to get poutine and an Orange Julius at the food court. We didn't stay at the mall very long at all though, because Eric has no neutrophils (germ fighting white blood cells) so its not really safe for him to be in crowds. 

Sunday the kids had an easter egg hunt in the morning. Eric woke us up at 7:40 saying "there are eggs everywhere!" In the afternoon we went for Easter "linner" at Granny's with Uncle Dave, Auntie Jenny and Uncle Jay. 

Monday Chuck had to go to work but Joel, Eric and I stayed home with Eric vowing to do nothing all day!

Tuesday Eric went to school and I was home alone!!! He made it most of the day, but did ask me to pick him up about an hour before the end of the day because he was really tired. That's the longest he's been at school in months. 

Wednesday Eric and I headed back in to clinic. The site on Eric's chest from the miss last week is so badly bruised. It is quite a large bruise and the middle is about a quarter-sized purple/black splotch. Over the weekend, his port did slowly flatten again, but had moved further up his chest so it is above the bruise. I told him they could probably access it there, but he was having none of that. I put Emla in the same spot they did the peripheral IV last week hoping for the best and lucky they were able to do the PIV there. Eric's Oncologist looked at the bruise and Eric's unwillingness to try an access and said lets wait until next week. We will be back in on Monday, which will give the area more time to heal. He is going to ask one of the surgeons to come up and see Eric Monday so we can have a plan. Eric was annoyed to not have a plan that day because his port was bothering him. However, he really didn't want anyone to touch it and he was a bit cranky after not getting enough sleep the night before, so it was a bit hard to talk to him to make a plan. Due to the holiday, it was an extra day between Eric's appointments so no surprise that his platelets were <5. Normal is about 300. His hemoglobin is holding fairly well so far though, and his blast count is remaining fairly low. We were in and out of clinic fairly quickly which was nice as we've been having too many complications and long appointments lately. 

Thursday Eric's class went to the zoo and we had it all planned so that I would drive only him, so he could come home early if he needed to and we'd rent the Critter Cruiser so he wouldn't have to walk around the whole zoo. Unfortunately, he woke up with a headache, which he'd actually been having the day before as well. I didn't think too much of it because it didn't seem to be too bad, until bedtime. His neck was also hurting after he'd napped in the car the day before. I had hoped I could give him some pain meds and we'd still make it to the zoo, but he really wasn't feeling up to it. 

Eric doesn't go to school on Fridays, but he did have a meeting with his online teacher scheduled and we'd hoped to get a haircut. Unfortunately, he still wasn't feeling up to either. However, he did make it outside for a bit in the afternoon and said being outside felt really good. 

Saturday morning, Chuck, Joel and I headed out for yardwork. Eric is not only not up for it, but is not allowed to play with/be around dirt due to a risk of fungal infection. He still came outside though and serenaded me with bubbles while I weeded. 

Back to clinic Monday and Friday next week. 

Update Week of March 29

We started with a great weekend. Eric was feeling good. He went to a birthday party on Saturday and was able to stay for the entire party. He had a playdate on Sunday and even asked to stay longer there. He did make a decision on Sunday to quit swimming lessons though. He's been doing them steadily for about a year and a half and has whipped through the levels, but he has missed all of them in the last couple months and even the ones before that were a bit challenging. Hemoglobin carries oxygen around the body and that makes swimming with low hemoglobin extra challenging. 

Monday we were planning for a longer day at clinic. Based on his blood counts the previous week, we thought he would probably need blood. The port access was uneventful and Eric's hemoglobin was 86, which is certainly low, but not necessarily transfusion low. Eric did ask to have the transfusion on Monday because he was worried he wouldn't feel well if we waited until Thursday, and he was excited to go back to school on Tuesday. We had planned for a long day anyhow, so we went for it. I had brought a single serving of lasagna from the freezer for me and it had marinara on the top of it. As I was taking it out of the microwave, it just slipped through my hands and BAM onto the floor. The marinara splashed all over the floor, up the cabinets, onto the countertop and ALL OVER me! It was on my shoes, my pants, my t-shirt and my sweater. It even landed on my face! This was after the platelets but before the blood even started so we were still there another 2-3 hours and I smelled like lasagna!!! The rest of the day was much less exciting, thank heaven. 

Tuesday morning Eric was excited to go back to school after a long 4 weeks away before Spring Break. I was so excited myself!!! It was the first time I was going to be home alone in 6 weeks! Also, it gave me time to reflect on the past 6 weeks. They were hard - headaches, flu, headaches, rising blast count, changing treatment, a week in the hospital, more headaches. Eric was feeling so poorly and barely left his room and at the beginning I wasn't feeling well either. The weeks were hard at the time as I kept waiting for Eric to feel better the next day, the next week. However, it's only in looking back from a place where he really feels better that you realize how truly tough those 6 weeks were. 

I ended up with only an hour and a half to reflect before getting a call from the school to pick Eric up. His tummy was cramping really badly and he was having some intestinal distress. It seems like maybe he has picked up a stomach bug from somewhere. He wasn't able to go to school Wednesday either, but at least he felt pretty good aside from the stomach cramping. 

Thursday we headed back to clinic for a quick in and out platelet top up. Or so we thought... Eric was so happy on the way into clinic. His Oncologist just happened to be standing by the entrance as Eric was laughing and smiling and race walking (and beating) me to his room. Unfortunately, that didn't last long. We didn't know the nurse that Eric had. She'd been off for a year, but worked on T8 before that, on the inpatient side, and in the clinic before that. She seemed very confident and comfortable, but she missed Eric's port. The misses hurt him so badly, but this actually seemed quite a bit worse than normal. He cried a lot and wouldn't let anyone go near him. Usually if we have a miss, we just go again right away. He doesn't like it, but he does it. We got a different nurse, one who has accessed his port successfully in the past, but he was begging me not to make him (speaking of things that are hard...) so we decided we'd give him a break for a half hour and then try again. Meanwhile, we see that the site is super swollen and sticking up in a huge point. We've never seen that before. His Oncologist came by for a look and he ordered an x-ray to see if his port was still in place. They came up with the portable giraffe x-ray machine. I love the giraffe. It's just so cool that they paint the machines like that for the children's hospital.

His Oncologist was there and looking at the picture on the portable machine but couldn't see really well. He said he would go downstairs to x-ray to look at it on the big screens down there. Also after a discussion with his Oncologist, I gave Eric a choice between trying the port access again or having a peripheral IV inserted. I wasn't sure which he would choose because he hates peripheral IVs, but he didn't want anyone near his chest so chose the PIV. We put warm blankets on his arms to make the veins stand out. Then his nurse put emla in like 5 different places on both arms to make sure there was a good spot. Eric was not having a good day, clearly, and emla with a sticky plastic dressing over top all over his hands just made him even more upset because it was difficult to eat and drink. At this point, we'd already been at clinic for more than 2 hours and now needed to wait another hour for the emla to work and numb the site where the IV would be inserted. His Oncologist came back and said that it looks like the sutures holding Eric's port in place have come undone. When this happens, it's possible for the port to flip right over, but he doesn't think that is what happened. He thinks it drifted toward his armpit, which I had actually noticed, but just assumed it was from him growing. It seems to have drifted so far that it's hit something on the way and flipped up on its side. So it is not that the nurse missed, it wasn't there to hit; however, since you have to grip it to put the needle into the flat part in the middle, she probably should have realized something wasn't right. The swelling at the site had decreased, but the bruising had started to set in and Eric still wouldn't let anyone touch it. He did say that he felt like it was on his side and pushing out on his chest a little. With his Oncologist, we decided we'd worry about it next week once the area has had some time to heal and hopefully he'll let someone feel. However, it is possible, probable even, that he is going to need surgery to correct the placement and put in new sutures. The emla was on for 1.5 hours by the time the IV team showed up and Eric and I were so ready to go home, but still no blood drawn yet, which means no platelets yet. This was 4ish hours into the appointment at this point. Eric has only had a couple of PIVs before and they've always been done by the nurses on the floor: once in the ER and the other time on T8. However, it was nice that they called the IV team and we didn't have to risk any misses. Aside from the fact that the IV team does it all day and are good at it, they also use an ultrasound to guide them. They were done and blood drawn so fast! We got the counts back in about a half hour. Big shocker, his platelets were low, so the platelets finally arrived from transfusion medicine, at which point we knew we had an hour to go. It was proving to be a very long day and we both really wanted to go home, but at least now we had a time frame. 

Once the platelets started, Eric's Oncologist was finally able to sit down with me to go over some results that popped up following the last biopsy. Apparently there is an additional mutation that is common in MDS and AML patients so they've been looking for it on his biopsies. It has always been negative, until this last one. So basically his already abnormal, mutated cells, have mutated again, or some of them have at least. I told his Oncologist this didn't sound like good news. His Oncologist said the good part is that it's a known mutation and there are treatment options available for it. He said it's like his disease has given us a back door to treatment. That sounds like it might be good, but I am going to reserve judgement on this whole thing until I know/see more. In the meantime, his doctor is applying for a med to treat this and when (if?) he gets approval, we will discuss how and when to incorporate it. 

We finally made it out of clinic after just over 6 hours there and just in time for rush hour. We got home just before 5:30. Eric collapsed on his bed and I collapsed on the couch and ordered take out for dinner. We are very happy to have the long weekend to rest and recover.  

Cops for Cancer is starting their season this month. They start their training for the big long ride and do a lot of fundraising. The kick off is later this month, but on Saturday, April 4 (this weekend!) they will be at Coquitlam Center (near the Apple Store and Bath & Body Works) from 10-6 doing an EIGHT HOUR stationary bike ride. These people are incredible so stop by and give them some encouragement and maybe a donation. They provide funding for Camp Goodtimes and pediatric cancer research through the Canadian Cancer Society. 

Back in clinic next week on Wednesday when we will learn more about what's going to happen with Eric's port. 

If you read to the end, good job! I know it's a lot, but it helps me process what was a very rough day for me, and even worse for Eric. I asked him how he's doing today after the rough day yesterday and he told me he didn't want to talk about it. So we know he's good at compartmentalizing like his mom, but according to my counsellor, that is not actually how we are supposed to work through our feelings. Oops! 

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.