We had a pretty low key weekend. Eric had his swimming lesson on Sunday and that was about it. They worked on flip turns and he's gotten really good at them!
Eric's Monday appointment wasn't until 11am so Eric and I were having a chill morning when I received an email from Eric's Nurse Clinician. She was asking if we could stop at the Heart Center on the way in for an ECG because Eric's doctor had received Health Canada approval for the new med following his recent appeal. Now he needs to go back to the company, who initially approved the access under the premise of a clinical trial, to see if they will now provide the medication under the new premise. In order to submit the request, he needed an ECG within 10 days. Luckily ECGs are quick and easy and can be done as walk in.
Eric's platelets had been pre ordered and were ready to go as soon as he was accessed. We were on track to be pretty fast, but luckily still had a chance to chat with Eric's Oncologist. He wants to wait until the drug company has approved and we have the medication on site before coming up with a concrete plan. However, he confirmed that we'd want to start 1-2 weeks after the current cycle ends and after another biopsy. He also reminded me that we will need to be inpatient for at least part of the time; though we really haven't talked about how long that might be for.
Health Canada approving this med is, of course, very good news. However, I'm finding myself a bit focused on all the other stuff that goes along with it - that it will likely make Eric ill, that we have to be inpatient, and all the unknowns.
We had Eric's bedside nurse plus his Nurse Clinician, Nurse Practitioner and Oncologist all visit so they were all able to look at his weird bruises. They were only concerned if they were continuing to bleed under the skin and/or if there was swelling at the site of the bruises. There wasn't, so all good. Eric and I had assumed his platelets would be "less than 5" with all the bruising, but they weren't. They were 6!
We were ready to go about 2 hours after arrival, except I was having some challenges with pharmacy. They were all of my own creation; I had called the BCCH pharmacy for a refill, but then forgot I did it and asked our nurse clinician to coordinate a refill. I had to go down to pharmacy and explain what I'd done and then see if they had any meds ready for us. They had initially said they wouldn't be ready until 2pm, but the squeaky wheel gets the grease, and they had them ready for us a little after 1pm when we finished up at clinic. A nice quick visit and traffic was a breeze!
Eric has been attending school fairly regularly, but came home after recess on Thursday because he was just so tired. It is near the end of this cycle so no surprise it is taking a toll.
Back to clinic for another platelet transfusion on Friday. Eric's Oncologist told us on Monday that he would be away Friday, but that if he had any information from the drug company he would let us know. Unfortunately, he didn't have any. The Nurse Clinician said he reached out to them before he left to give them a little nudge. Hopefully by the time we're back on Wednesday, after the holiday here Tuesday, there will be an update. We saw our Nurse Practitioner for a quick exam. Eric doesn't seem to have any new bruises, but his old ones aren't healing either and his platelets were "less than 5" this time. His hemoglobin took a bit of a dive since Monday's appointment, but not low enough yet to need a transfusion. We were just over 2 hours. With the platelets pre-ordered we seem to have shaved an hour off our average appointment time.
Eric has been quite tired since Thursday and slept for 12.5 hours last night! Chuck and Joel are gone to the Sunshine Coast for the weekend, but Eric and I are staying home, with Millie. Eric has a birthday party and swimming lessons to attend and other than that, I think we'll spend the weekend resting up.
No comments:
Post a Comment