Week of June 28

I ended the last post with fingers crossed to be discharged from hospital last Sunday. Sadly, we were not. Eric was coughing so badly Sunday morning that they started him on a Ventolin inhaler. His lungs were tight and the doctor kept coming back to listen to his lungs, plus his nurse was listening to his lungs every time he had the Ventolin inhaler. He was counting, like, this is the 8th time someone has listened to my lungs this morning. Luckily, the Ventolin worked and his lungs sounded better and he stopped coughing for quite a few hours. He did need a bit more Ventolin before bed and they wanted to keep the O2 monitor on him all night. He's usually pretty annoyed with the leads, but handled it well and only de-sat'd one time at 3am. He didn't even wake up, but I sure did. That alarm is loud!

Additionally, over the weekend Eric's blast count started to rise again and by Sunday was up substantially. It was down on Friday which was only 5 days from the end of the last IV chemo so we assumed that it would continue to drop for another couple of days, but it did the opposite. I told the doctor Sunday morning that I was really concerned with the blast count and she suggested waiting until Eric's Oncologist was in the following day. I didn't like waiting, but also didn't want to do anything without the involvement of Eric's Oncologist because he's always got a bunch of plans brewing in his head. 

Monday morning Eric's Oncologist comes in the room and he says: this is what's happening and this is how we're going to fix it. I felt instantly better. I knew he would have a plan, but actually seeing and hearing it from him was such a relief. 

He doesn't believe that Eric is ill. Given the negative swab and cultures, the fever, coughing and what is happening with his white blood cells, he believes it is Differentiation Syndrome. This is a potentially life threatening side effect of the treatment that Eric started 2 months ago. The medication is causing the blast cells to differentiate into normal white cells, which is a good thing. Unfortunately, this can cause excess fluid build up around the lungs and heart. The Oncologist has ordered a twice daily steroid to treat the lungs and another round of IV chemo to treat the climbing blast cells. Meanwhile the oral treatment that he started 2 months ago that is causing all this continues and the oral treatment that he's been on for years continues at an increased dose. We are expected to stay at the hospital until Friday for the 5 days of IV chemo and for the lung symptoms to resolve. Eric also had an echo and his heart is clear of fluid, so at least that is good news. 

Despite the negative swab and cultures, and the diagnosis of Differentiation Syndrome, we are on contact precautions (isolation). It's super frustrating but we know they have to keep the other immune compromised kids here safe. This means I somehow have to entertain Eric all week in this one room. Thankfully we had this awesome Lego set waiting for just such an occasion. Thank you Baker Drive!

The week passed with Lego and movies, in between rest, since Eric isn't feeling well. The cough is annoying and hurts. The steroids make him moody. The chemo upsets his tummy. Daddy came in Tuesday night and spent Canada Day with Eric while Mama went home to see Joel and Millie, do laundry and make some food to bring back to the hospital. Eric wasn't feeling great Tuesday night and he really didn't want me to leave. It was very, very hard to actually walk away that night and take a break for myself. 

Thursday we saw the same T8 inpatient doctor (pediatrician) we've been seeing all week. She confirmed she knew the plan - get out Friday so Eric has a day to rest before going to Camp Goodtimes on Sunday. This was a plan that his Onc was on board with and hoping to achieve when we saw him Monday. Mid-week the blast count dropped a little which was good. It indicated the increased treatment was starting to work and hopefully as the week and treatment progressed, the blast count would continue dropping. Unfortunately, on Friday the blast count jumped back up above 10. Additionally his white blood cell count is continuing to skyrocket. I was really concerned about what that might mean, but had no idea until we saw the doctor since this is not a position we've been in before. An Oncologist who works closely with Eric's Oncologist stopped by to let me know that they were going to start another medication that is designed to lower white blood cell counts. It is another oral chemo and they need to monitor to see how he tolerates it, as well as, make sure the cells don't cause other issues as they break down. This meant we weren't going home on Friday as we had planned and when I told Eric he had an absolutely epic - and completely valid - temper tantrum. We had already spent 7 nights in the hospital and believed we were going home that day and there hadn't been any indication before that moment that we might have to stay. Eric also doesn't understand why his white blood cells increasing is a bad thing. When his counts are low, we always want his white blood cells to increase so he can fight infection. He didn't know before that they could rise too much.

Next Eric's Oncologist came by, but Eric was still screaming so I went out in the hall to talk to him. He didn't believe Eric would be safe for camp on Sunday. He thought that maybe he could go Monday or Tuesday but camp only runs until Friday and Eric would have to come back for a count check mid week. Alternately, he'd already talked to the Medical Director for the Camp and they had space to accept both boys for Kids Camp 2, instead of Kids Camp 1. This seemed like a better alternative for Eric to have a safe, fun and full camp experience, but was still heartbreaking. I had to go back and tell Eric, who was still crying, that I had more bad news. One of the Child Life Specialists came by and offered to get us Starbucks to cheer us up and she gave me a hug since I was also crying at this point. She also left Eric a list of Lego from an order that had just arrived, so he could choose one. Believe it or not, he was still way too upset to even be distracted by Lego. It took 3 hours, and a lot of cuddles, but eventually he came around and chose a Lego set. 

Eric's team has done everything they can in the past to make fun things happen for Eric so I know it really isn't possible right now. Even Eric had said on Thursday that he was worried he wouldn't pass the swim test (to swim without a lifejacket) even though he's an amazing swimmer, because of the cough. However, logic was not a factor on Friday and Eric said if he couldn't go to Camp 1, he wasn't going at all. Of course I ignored this and accepted Camp 2 for both boys and cancelled the campsite that I had booked at Rolley Lake for our family for that week. 

Saturday morning the Child Life Specialist was still trying to cheer Eric up and she brought a waffle iron, dry mix, milk and eggs to our room so Eric could make waffles with her. 

Later on Saturday Daddy and Joel came to visit. Granny had given Eric a Pokémon Battle Deck earlier in the week and Eric was itching to try it out so Joel brought the board game from home and his own battle deck. Chuck brought Subway so we had a family picnic in our hospital room and then the boys battled. They each won one game and everyone left happy. 

Unfortunately the day was downhill from there. A port can only be accessed for a week at a time, before the needle has to be changed. Technically Eric's should have been done Friday, but that was just not a good day. So his port was de-accessed Saturday afternoon. His chest got a bit of a chance to breathe and he had an opportunity to have a good scrub in the tub. I had asked Eric's nurse in the morning if she had a lot of experience with ports (because she is new to me) and she said that she did. It was actually the third day in a row that we had her and neither Eric or I were all that fond of her. The first day she came in too early while we were still sleeping and with the subtlety of a hurricane so we definitely did not get off on the right foot. It is rare for us not to like one of the nurses. Anyhow, when it came time to re-access Eric's port she missed. Not only did she miss, but when he told her to take it out, she didn't. She was fiddling with it instead and when he told her to stop touching it, she kept right on fiddling. I was not happy and obviously neither was Eric. I said that we would not try again then and instead would get someone on night shift to do it. We ended up having a relatively new nurse on night shift, so one of the more experienced nurses did it. Eric was really nervous but she had no trouble at all. 

It is Sunday morning and Eric's WBC counts are still increasing and blasts are now over 15. The Onc on for the weekend came to listen to Eric's lungs and she says they sound about the same as yesterday, but he hasn't been coughing as much or needed as much Ventolin today. She said we could hold the treatment that is causing the differentiation syndrome but they believe it is doing good things so don't really want to hold it unless his symptoms are getting worse. She also said it's not unusual for the new chemo that is supposed to decrease white blood cells to take up to a week to work so she isn't terribly surprised that the counts are not dropping yet. She did say this has to peak and she had hoped that would be yesterday. I asked her does it have to peak? Why wouldn't it just keep increasing? But apparently they do believe that it will. At any rate, we can't leave here until there is a trend of these counts decreasing, so it's not today, and it's not tomorrow. On the plus side, Eric's Oncologist is responsible for the ward this week so we will get to see him a lot. Meanwhile, we are still on isolation through Monday and running out of movies to watch. Eric asked for waffles again this morning and while the Child Life Specialist was here she said she'd put a sign up on Eric's door soliciting movie suggestions. 

I did not trade with Chuck at all this weekend. All Eric wanted was to go home on Friday and he wasn't allowed, so it would have been terrible if I had. 

Week of June 21

Summer vacation is starting off with a bang - Eric is back in hospital 👎

On the plus side, Eric did make it to the waterslides with his class on Monday. He rode there on the bus with his classmates. He went on some slides with his friends and then they had lunch and just hung out for a bit. Of course, he bought some treats in the afternoon for the ride home.

I had tagged along in my own car in case Eric didn't make it the whole day, but he did! However, he didn't want to go back on the bus, so I drove him home and we enjoyed AC (it was stinking hot that day!) and Taylor Swift. 

After the big day Monday, on top of the very busy previous week, Eric took Tuesday morning to rest. Tuesday afternoon the counsellor at his school took him up to the middle school for a tour, since he had missed the class trip. At the school they ran into Joel and the counsellor took a pic for me! 

Wednesday Eric's class was going to be having an ice cream sundae party and he had planned to go in for the party, but just as we were walking out the door, Eric decided he couldn't do it. He'd been coughing a lot and it was making him feel pretty miserable. We initially thought it was just a lingering cough from his last virus, but the cough seemed to be getting worse and not better. 

Thursday morning we had Joel's Grade 8 leaving ceremony. Eric came along to support his brother, but wasn't feeling great during the ceremony and his legs started hurting. After Joel's class was finished, Chuck took Eric home and then came back for the rest of the ceremony. 

We took a bunch of photos after with Joel's friends and then a couple other mom's and myself took a few of the boys out for lunch to celebrate. Eric elected not to join us but did ask me to bring him home some sausages. He spent the morning relaxing and then when Joel got home they played some video games together. Later in the evening Eric was feeling a bit miserable and hot. I checked his temperature and he had a fever. We are supposed to call the Oncologist on call whenever he has a fever because it could be a very serious infection due to his port, so they want us to come into the ER to be seen. Pretty much every time we call, Eric's fever disappears before we get to the ER and never returns, but buys us a 3 day hospital stay, which is very frustrating. Since I assumed the fever was due to the cough and not a blood infection, which I am not supposed to do, I waited a bit to see if the fever would go away before I called, which I am also not supposed to do. However, it did go away! We kept monitoring until bedtime and the fever never came back. We had a clinic appointment Friday morning anyhow, so this seemed like a win. 

Friday morning, the first day of summer vacation, and still no fever, we headed to the clinic for a scheduled check up and platelet transfusion. I did come clean and tell Eric's NP that he had a brief fever the night before and she didn't scold me too much. He still didn't have a fever, but was coughing so she ordered a nasal swab to check for viruses and a chest x-ray to see how his lungs were looking. She emailed me later in the day when we were back at home to say that the swab was negative and the lungs were clear for pneumonia, but were looking a little inflamed so if he did have another fever, we would have to go to the ER. It was less than an hour later when Eric did, in fact, have another fever. We were both so frustrated that we'd already driven to the hospital and back once already that day and were going to have to go again. Eric was additionally frustrated that he'd had his port accessed once already that day, but it was de-accessed because there was no reason to leave it, plus we had a ferry reservation to the Sunshine Coast for that evening, so now his port would have to be accessed again. I called his NP hoping that since clinic was still open we'd be able to go there and not to the ER but she told us they aren't allowed to bring people into clinic after 4pm so we had to go to the ER. We got to the ER just before 6pm and were shown straight into a room. Surprisingly, it took four hours to see the ER doctor when we usually see the doctor so quickly because of that chance of blood infection. The Oncology Fellow came down to see us right after the ER doctor left, and said that Eric would be admitted. I had been holding out hope they'd send us home with a prescription for antibiotics since Eric actually has neutrophils, but no such luck. While they are happy he has neutrophils, they wanted to err on the side of caution and give IV antibiotics since he is still on oral treatment (which suppresses his immune system) and they weren't finding an obvious cause (virus or pneumonia) for the fever. Even though I was hoping for the best, I packed all of our stuff preparing for the worst. Unfortunately with the delay in seeing the ER doctor, we didn't get a room on T8 until 11pm. At that point it took another hour to get settled for bed while we waited for the pharmacy to send up Eric's meds and I got our things from the car. 

Eric slept like the dead overnight, but woke up at 8am, which is just not enough sleep for a sick boy. When the doctor came by earlier today she said that his cultures weren't growing anything yet and his infection indicators are low, so it's probably not an infection. However, they'd like to keep him for the 48 hours post fever and continue the IV antibiotics. Eric hasn't had a fever since midnight and is feeling a lot better today, but still coughing. He has been playing on his switch and the Xbox while I went to Safeway to pick up a few food items for us. Now we're just hanging out watching Harry Potter. Fingers crossed we get to go home tomorrow, even though it will be late in the day if they do let us out tomorrow! 🤞

Week of June 14

This week has been such a rollercoaster and I do recall at one point during the week exclaiming in frustration that I wanted off the ride. No surprise there, but not sure I'm all that vocal about it usually. 

Clinic on Monday started out amazing! They got new recliners in the outpatient clinic rooms. I spent a lot of time in the chairs here and they were definitely missing a foot rest. Now they not only have a foot rest, but nice wide arms that I can rest my phone and water glass on (and then spill my water glass) and they are so comfy. I was ridiculously pleased with the chairs, so much so, that I took a picture! 

The rest of clinic was a lot more eventful than I would have liked. Actually, not all that eventful, just lots of information to ponder. Eric's platelet transfusion started and I got his basic bloodwork and learned that his hemoglobin was 84. He typically gets symptomatic at 80 and having fallen from about 100 last week to 84 this week and with a busy week ahead, I thought perhaps he should get blood that day. However, Eric was having NONE OF THAT. He just wanted to go home. He didn't care if he'd have to have a long day later in the week, as long as it wasn't today. One of the other numbers that comes in that basic bloodwork is white blood cells and when I heard the number was 12-point-something, I knew we were in trouble. The number last week was 4-point-something so that's a pretty big change in a short period of time and blast cells are one of the numbers that make up that overall white blood cell count. Unfortunately, I had to wait for the differential, the break down of the white blood cell count into it's components, to find out what the blast count was. Our team got the information and then Eric's Oncologist looked at the smear under the microscope with the pathologist as well to confirm what the numbers were indicating. There are some positive numbers, like his neutrophils (germ fighting white blood cells) are up but so are the blasts, substantially. Eric's Oncologist asked if we could come back on Wednesday for bloodwork to see how things change in the next 2 days before deciding on a course of action. Going in on Wednesday will also allow Eric to get a red blood cell transfusion, hopefully before he gets symptomatic. The team also asked us to go for a chest x-ray on our way out of the building. Eric was so upset because he just wanted to go home. It didn't take too long and Eric's Oncologist wants to see if he's got fluid on his lungs. Eric's been coughing a lot and between that and what the bloodwork shows, it could be a sign of differentiation syndrome, which is a dangerous side effect. It was a side effect that was common with one of his previous medications, but it is not so common with this one. 

Tuesday we got to stay home, thank heaven! I puttered around with some errands and chores while Eric entertained himself but he was pretty headache-y all day from the low hemoglobin. In the morning I did hear from Eric's Nurse Clinician that the x-ray was normal, so that was a relief. 

Wednesday we headed in to clinic for bloodwork and a red blood cell transfusion. We waited 1.5 hours for the unit of blood to arrive, even though it had been pre-ordered and Eric's port was already accessed, so bloodwork was done quickly. Transfusion Medicine is definitely on my naughty list. And yes, I do keep a running list in my head of places I am not too happy with in any given week. When the bloodwork was back, I spoke with Eric's team. Unfortunately, his blast count has risen again and is now just under 10. Eric's Oncologist is still happy with what is happening in his white blood cells, with the exception of the blasts. He says we've got to knock those blasts down. This is the point we were at with the previous treatment that we tried, but we weren't allowed to combine anything with it. This time, with the current treatment, we are allowed. This means that we can keep the treatment that is doing good things happening, while at the same time administering an IV chemo to address the blasts. Unfortunately, it also means we're coming back to clinic every day for 5 days, in the midst of all of the end of year and grade 5 graduation things. Eric handled the news like a champ, as he always does and looked on the bright side, saying at least we don't have to be inpatient; however, he was also a lot more grumpy this week, with the added appointments, than is usual for him. 

While we were at clinic, an OT (Occupational Therapist) came to talk to us. I had asked because while Eric is walking without pain now, there were a few weeks where he wasn't able to. Additionally, he doesn't have the endurance to walk long distances and I was thinking about the summer ahead. With the OT we agreed to borrow a pediatric wheelchair from the Red Cross. The OT was great. She said we like to save our energy for fun, so wheel up to the playground and then hop out and play or take the wheelchair along on a walk to hold all your things, but then Eric can pop into it if he needs a rest. It was a longish day because blood takes longer to run than platelets and we ended up driving in and out in rush hour after a long appointment. I haven't complained much abut traffic recently, but it is still awful. Traffic is also on my naughty list.

Thursday was Eric's leaving ceremony since Grade 5 is the last year of elementary school here. This felt like an important moment after everything that Eric has been through since Grade 2. Unfortunately, Eric hasn't been in school to practice for the leaving ceremony, but his teacher did take the time to meet with us to do an overview for him. Additionally, because of the 5 days of IV chemo, we had to drive into the hospital in the morning. As Eric angrily pointed out, all the way there and back for a ONE MINUTE infusion. We made it back home in time to pick up Joel from school and for us all to get dressed and head up to school, though it was a whirlwind of a start to the day. Chuck had gone to work in Abbotsford for a half day and was leaving at noon giving himself lots of time to get home, but the naughty traffic struck again. There was an accident on the highway and he was stuck and couldn't get around it. Luckily, he ran into the gym just as the ceremony was starting. Unfortunately, as soon as the ceremony was over Eric insisted on going home immediately and when I suggested one picture he cried. It was way too hot in the gym and his tummy was upset. We did do one family photo and as you can see from the pic, he was not impressed. 

I was sad because after everything that Eric has been through, this seemed like a big milestone and I thought he would enjoy mingling and taking photos from his friends. However, I have to take my cues from Eric, which I am still learning to do and I find especially tough when I've got expectations of how something will go. In retrospect, he was probably nervous and overwhelmed. He doesn't love a gym full of people looking at him and he hadn't got a chance to practice like the rest of the students. It was also pretty crowded in there and he doesn't do well with crowds. Later in the day we did go for dinner with our friends, who also had a graduate, and Eric really enjoyed that. At dinner he said he hated the whole ceremony and I said, I got a photo of you smiling. 

When you have a younger sibling at the school, they walk you out of the gym. If you don't have a younger sibling at the school, you walk with your little buddy. However, Eric hasn't been at school much and he told me he didn't know who his buddy was and thinks the last time he did buddies they were making Christmas cards. So I asked his teacher if we could have Joel walk him out and, while they don't generally allow that because it would be so challenging to organize, the school graciously consented. When Joel had his Grade 5 graduation, Eric was only 5 months post transplant and was not at school, but was also able to walk Joel out of the gym. 

It has been a hard 3 years, but look how they've grown! I can't believe we are finished with elementary school. Baker Drive Elementary has been the most amazing, supportive community over the past 9 years. 

Anyhow, on to Friday and back to clinic, again. Eric was so much more chipper than any previous day in the week. He even told his Oncologist, who I love and Eric barely tolerates, that he appreciated him. Eric had his bloodwork and a platelet transfusion. His blasts have come down a little bit with the chemo infusions and his white cells are continuing to do things that are making Eric's Oncologist happy. He said "his body is fighting." Clinic was fairly quick and we hit the Red Cross to pick up the wheelchair that was ready for Eric. He is very happy with it, hoping that it will allow him to do a little more this summer. 

Back home we got a quick rest before heading up to the school for the Grade 5 slip n'slide. This is such a fun event that the parents organize for the Grade 5s to celebrate with their friends and classmates. Even though Eric's port was de-accessed specifically for this event, he only went down the slip n'slide once but definitely enjoyed the rest of his time hanging in the sun with his friends eating pizza and ice cream sundaes. The lovely mom who volunteered to create the Grade 5 yearbook even brought Eric's yearbook to the party so that his friends could sign it since he probably won't be at school much, or at all, next week. My heart is so happy when people are thoughtful enough to consider Eric's needs in advance. It's not an easy thing to do when you don't live in our world and have 40+ other Grade 5s to consider, but I appreciate it so, so much. 

Saturday morning we were back to the hospital, UGH. It was planned to be a quick in and out with just the one minute chemo infusion, but Eric did have to be re-accessed after being de-accessed the day before for the slip n'slide party. His port is really bothering him these days and he found it pinched a lot; though, the access did go well and it wasn't bothering him anymore by the time we got home. After the week we've had, it was nice to have the afternoon free (ish) and after grocery shopping, I treated myself to a pedicure! 

Sunday morning (Happy Father's Day!) and I'm sitting in a comfy chair at the hospital. We're on the inpatient side of T8 since clinic isn't open. Eric has already had his last dose of the IV chemo and we are just waiting on platelets. We had actually planned to come in today, regardless of the chemo, for platelets because tomorrow is the Grade 5 trip to the waterslides. This is an annual event for the Grade 5s and Eric has been waiting for it for 6 years. Unfortunately on Monday there was an incident at the Cultus Lake waterslides that caused the trip to be cancelled. Eric was absolutely devastated, but thanks to the quick work of Eric's teacher, they were able to relocate the trip to Bridal Falls waterslides. Eric is relatively happy with the substitution. He is sad not to be going to Cultus, but is very happy that he still gets to go to the waterslides with his friends. I love that his team at the hospital are so willing to be flexible to make these things possible for Eric. It only took 36 minutes to get here today, which is good, but just reminds me of how ridiculous traffic is the rest of the time. Why does it take another 24 minutes on the regular?!? That's without an accident or peak rush hour. UGH! Hopefully the platelets will arrive quickly so we can get back home. It has been a long, long week and I was feeling my margarita shirt this morning. It says: I NEED A HUGe margarita. 

Chuck's family is coming over this afternoon to celebrate the June family birthdays and I've got caesars, not margaritas, ready to go! Happy Father's Day to all the dad's out there and happy birthday to Chuck and Dave! 

We don't have to come back to clinic until Friday!!!!

Week of June 7

Eric and I were at clinic today when I realized that I had forgotten to update my blog over the weekend! That either means there isn't too much going on with Eric or I was too busy this weekend, or maybe both! 

It was a fairly uneventful week, Eric-wise. Monday was a pro-d at his school and his friend had a birthday party. It was the first time he ventured out, aside from clinic, in weeks but he wasn't going to miss it! His legs had been starting to feel better, but definitely not 100%. Even those it was sprinkling a little, they were swimming in a backyard pool and loved it! Eric got a bit cold and tired and had me come pick him up an hour early, but he made it 2.5 hours! 

Tuesday was Chuck's 50th birthday. The boys enjoyed the cake and spoiling Daddy. They think he's REALLY old, which is funny, but only for a few more years! 

Wednesday Eric and I went into clinic. He had his bloodwork and platelet transfusion. His Oncologist came to talk to me and said there are some interesting signs in his bloodwork that something good might be happening in his blood, but they're just soft signs and while he doesn't want to do another bone marrow biopsy yet, he can get some good information by drawing bloodwork for a split chimerism. Eric's Nurse Practitioner was saying this is good news and I said well, its not bad, but I will reserve judgement on whether or not it is good. Additionally, Eric's blast count is still a little elevated, which I don't like. 

We mostly just chilled on Thursday and Friday. Eric didn't make it to school with his legs still achy but he did have a lesson with his online teacher. Joel got to go to Playland on Friday for his school's Grade 8 Field Trip and had a good time. He even went on a couple rides which surprised me because he isn't really into rides. 

Saturday evening we gathered with friends to celebrate Chuck which was really wonderful to catch up with people we don't see as much as we would like to. 

We're back at clinic next week on Monday (aka today) and Friday, as well as, Sunday so that Eric can safely participate in the Grade 5 "leaving" events since it is his last year of elementary school. 

Week of May 31

We were able to come home on Sunday afternoon. All morning Eric was saying when will the doctor be here, when. Then the doctor showed up and Eric said "Finally! When can we go home?" He was still in a fair bit of pain, but had a better night and was just so done with the hospital. A platelet transfusion was already in progress and the doctor let us go when it finished. We were so happy and relieved to be home. We were supposed to have a clinic visit on Tuesday for platelets, but I emailed the team on Monday to ask if we could cancel it since he had platelets on Sunday and they were happy to let us do that. 

It felt like such a long, in a good way, week of freedom, from Sunday afternoon through Thursday. Joel was home for some of it too, having caught the cold that landed Eric in the hospital. Initially, Eric was in a lot of pain. The pain meds were helping, but not enough. He was even waking up in the middle of the night in pain. A Nurse Practitioner from the team that did the pain consult a few weeks ago called me to check in and was able to tweak the plan a little. That helped for Eric to sleep through the night. He spent the week working on his LEGO set on and off as the pain would allow and was so pleased to finish it. 

Eric started to feel a bit better as the week went on. He is definitely still in pain, but not quite as agonizing as before. We went to clinic on Friday and I did get a wheelchair to make it easy and painless for him to get upstairs. He had bloodwork and a platelet transfusion. Unfortunately, the blast count was up a little on Friday, but his Oncologist says we won't make any changes from a one off. He would be more worried if it was a trend so he says we will see what the numbers look like on Wednesday. 

Eric spent the weekend resting his legs. Though on Sunday we went out to Camp Goodtimes. We were invited to their training weekend to share our story and what Camp Goodtimes means to us. It was so wonderful to share with the volunteers how their selflessness positively affects our family. One the way out there, we saw a couple bears and on the way back a deer! 

Week of May 24 + Hospital, again

We got to have a nice visit with the family on Saturday afternoon and Sunday was pretty chill, lots of chores around the house for mom and dad, and lots of video games for the kids. Eric was headache-y Sunday, so we prepared for a longer day at clinic on Monday. We arrived, access,  bloodwork, and, sure enough, hemoglobin was low. First he had the platelet transfusion and then the blood transfusion so it was a long day, though fairly uneventful. Liver inflammation is down again and blast count remains low, but not zero. Eric had yet another ECG and it was fine. On the way out, Eric was complaining of pain in his right thigh but I thought maybe it was just from lying down all day and he'd be able to walk it off. By the time we got home, his pain was worse and he asked for pain meds. 

It was a long hospital day and I figured Eric would need to rest Tuesday, but maybe could go to school on Wednesday. Unfortunately, his pain was worse, he wasn't able to put any weight on his right leg and he continued to need pain meds. He spent all of Tuesday on the couch in the fetal position and even though he couldn't put weight on his leg, I wanted to make sure he at least moved a little. He'd been chatting up a special LEGO set with a friend and she gave it to him as an early birthday gift. It had arrived at our house, but I hadn't told him yet and this seemed like the right time. He was so excited and immediately moved to a sitting position so he could build. He built on and off Wednesday and Thursday and it was nice to see him sitting up, happy and engaged in an activity. Thank you!!!

Aside from the pain, Eric was feeling fine. Thursday late afternoon, I took Joel to track and when I got back I noticed that Eric was flushed. I felt his forehead and he was burning up so I got the thermometer and he had a fever, which means we had to call the Oncologist on call and come into the ER. We were there for the fever, but his leg pain was so bad that I had to get a wheelchair to take him from the parking spot right outside into the ER. We got into a room immediately and actually saw the ER doctor before we even saw our nurse. We do appreciate the VIP treatment to make the ER a little less painful. Our nurse had a quiet confidence and Eric was really concerned about the port access, but she got it easily, thank heaven. They started IV antibiotics and took blood cultures, urine cultures and a nasal swab, which is the fever protocol. They also gave him some fluids and pain meds and ordered an x-ray for his leg. Four hours later we got a room upstairs on T8. It was late and Eric was so tired and cranky. His platelets had been low, so they ordered some platelets for overnight, but that means he had to have 3 blood pressures, which they call arm hugs, even though it is way more painful and much less comforting than a hug. With all that and the bloodwork and vitals overnight, Eric did not get enough sleep. The pharmacist came in at 9:40 to ask me a question and woke us up then. Eric had to stand up to pee which was agonizing and he hadn't had any pain meds, so we asked for pain meds and they brought the wrong form. Then Eric asked for toast with peanut butter and a cup of milk and the nurse came back and said there's no peanut butter, no jam and no milk. WHAT?!?! Between the lack of sleep and the pain, this caused Eric to lose his marbles. He also was saying all morning that he wanted to go home. He is so done with the hospital after 3.5 years and especially after this last season with so many stays, plus he has the LEGO set at home that he wants to finish! I was trying to cheer him up, so I went to the Gift Shop and got him a LEGO puppy to build. Also, since we forgot his favourite stuffy at home, I got him a chocolate lab puppy stuffy that he has named Charlie. I suggested he name the LEGO puppy too, but he told me you don't name LEGO. 

At some point during the day, I did learn that the nasal swab was positive for Enterovirus, the common cold, which explained the fever, but he still didn't really have any symptoms, maybe a bit of a cough, and that fever only lasted about an hour. Eric had an MRI scheduled for the afternoon. Good thing Eric had his new puppy to keep him company inside the ER machine, while I kept him company in the room, but outside the machine. It took forever and I was pretty bored, and sleepy, but Eric got to watch Big Hero 6 while he was in there. 

Eric's regular Oncologist came by to show me the MRI pictures and discuss the findings with me. It was fascinating to see the pictures and it definitely helped with the explanation, but I will do my best. Basically a clump of blast cells in the marrow restricted blood flow to an area causing an infarction (death of bone cells) and then the tissue all around that area is inflamed which is causing the pain. Eric's Oncologist had gone to MRI to review the images and, interestingly, while he was there, they asked about Eric's left leg because they can see the same thing healing on that leg, which explains the pain from 3 weeks ago. There is nothing we can do except manage pain and wait for it to heal. 

Friday overnight was tough. Eric was up numerous times in lots of pain and not getting much sleep. Saturday morning the pain has been much better managed. Saturday evening would be 48 hours fever free and without the cultures growing, we should be able to go home. However, the doctor that came in this morning said that this is some of the worst kind of pain you can have and he was concerned we wouldn't be able to manage the pain effectively at home. We do have the same pain meds they use here, but we can only administer them orally versus the much faster acting IV. We don't have too much going on today, but Eric is having another blood transfusion. He went 3 weeks between his last two, but this time he just received one on Monday. This is likely the enterovirus burning through his hemoglobin. 

Please wish Eric a less painful afternoon, evening and overnight so that he doesn't hurt but also so that we can go home! 

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.