First, Joel is officially a teenager now. A giant teenager. eek! Unfortunately, I got his stomach flu from last week, on his birthday. It was awful. Do not recommend.
Finally, off to the hospital Monday morning, after all the snow. I was worried the roads and traffic were going to be awful so we left a little early, but there was very little traffic and we arrived almost 30 min early for our appointment. Since I was worried, I did take Chuck's vehicle as it's our only snow worthy vehicle. I got in it and the check engine light came on!
It was a bit of a rough day at the clinic, especially since I was already on edge from the snow and the check engine light. I guess since we arrived early, we had to wait quite awhile for our nurse to come and access Eric's port; I hate waiting for this because we can't do anything until we get the bloodwork results, so we need the bloodwork done! Eric's nurse got his port first try no problem, but Eric only gave her a B- telling her she took too long 🤣
As soon as Eric was accessed he sent me for a ham and cheese croissant and a chocolate milk which he'd been asking for since we arrived at the hospital. I was happy to oblige his craving since he hasn't been eating much at all. His doctor came to have a chat with us right after I returned so I was mindlessly opening Eric's chocolate milk for him while chatting with the doctor. I step back from Eric and the chocolate milk and he picks up the bottle and shakes it. And chocolate milk sprays EVERYWHERE! All over Eric, his iPad, his shirt, the hospital bed, the blanket, EVERYTHING. And Eric is so shocked (and cold!) that he starts crying. With 3 adults there (Grandma joined us for the trip) we quickly cleaned it all up and got Eric a warm blanket and settled him. Turns out I had opened the lid but left it sitting on top of the bottle so Eric thought it was still closed. Ironically, I did the same thing at Christmas with a jar of antipasto and showered myself and my kitchen in it. Clearly, I learned nothing from that incident.
Anyhow, after that excitement, we had a nice chat with the doctor. Eric is 2 weeks into his 4 week treatment and the doctor wanted an early indication if it might be working so he ordered some additional bloodwork to check. We should get the results of that back Thursday. We also discussed adding an additional "therapy" at this point, now that we know he is "tolerating" the Selinexor okay. This is something that Chuck and I reviewed with the doctor in our in depth chat before starting the current treatment. The plan is to add in the Venetoclax that he was taking before. This is the one that worked to put him in remission last year, and then failed to do so with an increased dose this past fall. The reason these are called "therapies" is (not just to annoy me) because they are not technically chemotherapy. They are targeted therapies working on specific cells, as opposed to chemotherapy, which just kills everything. Given that they still make Eric feel like crap, it seems like splitting hairs to me. The short version of this story is that we discussed adding in the Venetoclax immediately or waiting until we have the results of the additional bloodwork. Since the bloodwork is due back Thursday, I opted to wait until then.
This is where clinic started to get really painful. As I mentioned, Eric's platelets were 8, so he needed a transfusion. Our nurse came and told us the platelets were ready so she started the pre-meds (since Eric is allergic to platelets he needs pre-meds before every transfusion.) The pre-meds run for 30 min and then the platelets should be upstairs ready to go and they run for an hour. Unfortunately, the pre-meds finished and no one arrived with platelets. FOR AN HOUR. The platelets finally arrived about 5 minutes before I thought we would be leaving the hospital. I find this waiting absolutely excruciating. I try to put on a brave face for Eric, but in a world where everything that Eric has to do, and I have to watch, is difficult, this is one of the more difficult things, perhaps simply because it should be something that can be controlled/eliminated. To add insult to injury, it started snowing in Vancouver shortly after we arrived and never stopped. Mom and I watched it out the window worrying about the roads, while Eric watched it out the window worrying about when he would get to get home for sledding! While we were waiting for the platelets, I went to go make myself a cup of tea to try and find some Zen, and I ran into the Child Life person covering the regular person that day. She gave me an opportunity to vent and also went and got Eric a Lego set. She brought a little one since we'd be only be there another hour and it perked Eric right up. It took him less than a half hour, but was the perfect distraction at the perfect time, and is the cutest little dragon.
We eventually made it out of the hospital, and despite the time, the traffic wasn't too bad; I'm so glad lots of people chose to stay home. We got home, immediately donned our snow gear, grabbed Joel and headed up to the school for some sledding. We only had about a half hour before Joel had to go out to Code Ninjas, but we had a lot of fun. Eric barely even tested out his new platelets, since he didn't fall, and thankfully I didn't break a hip. Joel nailed hitting a jump with his sled and then landing on his feet. I really wish I had a picture of that because it was pretty impressive. Sadly I have no photos of snow fun because as soon as I took out my phone to take a picture, the battery died.
In summary, steady on for now, back at clinic on Friday for platelets and results of additional bloodwork.
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