We're slowly starting to get back into the school routine. Eric is still doing swimming lessons on Sundays, and has also been doing make up classes on Mondays the last few weeks. In Shark 2 he is just swimming, swimming, swimming for 30 min straight. It is definitely improving his endurance! Joel started Cross Country this week. It is with Coquitlam Cheetahs who he does track and field with in the spring, but he has never done cross country before. I picked him up after his first practice and asked how it was. He said just the warm up was 2kms!
I booked Eric's clinic appointments for the whole month of September a couple weeks ago. Eric is planning to go to school Monday - Thursday, so his Friday appointments can be anytime, but he asked if his other appointments could be at 1pm so that he could go to school in the morning.
Unfortunately Sunday night he had a bleeding nose at 10pm and it didn't stop until a little after 11pm so he didn't get much sleep Sunday night and was not up for school Monday morning. He rested on the couch all morning and we headed into the hospital at noon for his 1pm appointment. He was accessed by 1:20 and then nothing. I went looking for his nurse and found her in the hall and she said the platelets were on their way, walking up to us! However, when we were still waiting 45 minutes later I went looking for her again to see if the Porter got lost! They did show up 5 or 10 min later, along with Eric's Nurse Practitioner, so she said she'd come back later, but our nurse ran the platelets fast and our NP didn't make it back in time. We are there so frequently that if we don't have any concerns, we just leave without an exam because we know we'll be back again in a few days. Of course the team supports this also. I think we were out of there around 3:45, but traffic wasn't nearly as bad as it could have been for rush hour.
I'd been following the Cops for Cancer - Tour de Coast on social media all week knowing that they were coming to us on Thursday. Finally the day arrived and we were so excited!
Eric requested a drive by his school and the Tour was able to accommodate that. Eric's principal put the event in the school newsletter and the school raised over $1500!!! The classes went outside and lined the street to cheer on the riders and get high 5s. They had such a good time that they also cheered random vehicles that came down the street after the tour. Unfortunately the video is too big to upload here but I know many of you saw it on my social media. We are so grateful for the support of the school community over the past 3 years. They have been so wonderful to us through every step of this journey 🩷
Following the drive by, we signed Eric out of school and raced down to Thrifty Foods in Port Moody to meet the riders. We had lunch with them and then toured with them for the rest of the afternoon. We were in a community policing vehicle without the cage in the back for bad guys, but Eric still got the front seat while Chuck and I were relegated to the back seat. Eric got to use the radio to tell the tour when we were rolling and was even given a radio call sign of Coyote. He was also responsible for giving an X minute warning to all the riders to get ready before leaving a tour stop. We all had such an amazing time and they made Eric feel so special.
They invite Honourary Families to the Cops for Cancer events because the riders enjoy connecting with the kids they are supporting. Though, I don't think they realize how much it also means to us to connect with these incredible human beings who are putting themselves through this grueling ride completely selflessly. I tried to express to them what it meant to us, but I just don't think I have the words. We see directly the impact they have. Not just through getting to attend Camp Goodtimes, which is awesome, and I am so grateful for Eric to have the opportunity to attend camp like a "normal" kid. But also because in the 2 years since Eric's BMT started failing, we've seen and benefited from the advances in research. It isn't coming fast enough and there isn't enough of it, which is why we need to continue to raise awareness and funds, but at least we can see it and that gives us hope.
On the note of research, Eric's doctor is still waiting on Health Canada approval for the new drug that he wants to try. The trial that occurred in Toronto was not for Eric's particular brand of cancer, so he's having to jump through some additional hoops, even though it is related and is one of the conditions listed (on the FDA approval, maybe; I am not 100% clear on that.)
In the meantime, Eric is on Day 20/28 of this round of treatment, and it's giving his blood counts a beating. Luckily Eric is feeling pretty good. He is tired of course, but has been going to school fairly consistently which is impressive. I am not sure any of us would be merrily going to work. We were back in the clinic on Friday for another platelet transfusion and his white blood cells and neutrophils are still very low to non-existent. Additionally, his hemoglobin was down to 85 so we're planning for both a blood and platelet transfusion on his next visit.
Eric's visits next week are scheduled for Tuesday and Friday, in order to accommodate the long weekend we are creating. Since the kids don't have school on Tuesday the 30th for National Truth and Reconciliation Day, we decided to take them out of school on Monday as well and go to Halfmoon Bay for the weekend. As a result, Eric won't be able to go to clinic on that Monday, but it is probably for the best as I expect clinic will be a gong show since they are also closed on Tuesday. You wouldn't believe what it takes to plan for an extra day away. I spent quite awhile trying to figure out, if you go here then this is the impact on clinic and if you go here, then this is the impact. No matter what I tried, it resulted in an extra visit for us. I guess the extra planning and extra clinic visit is the trade off for trying to give Eric, and the rest of the family, some adventures and activities and trying to live as "normal" of a life as we can.
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