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!!!!