Tired. That's been the continuous feeling over the past several weeks. It's been a month now since our last update and so much has happened, but sometimes even sitting down to write everything out feels overwhelming. So if you're taking the time to read this, thank you.
Ryan ended up making counts on January 11, so the second month of consolidation ensued. He had a pretty rough time for the first week, feeling really nauseous and struggling to keep any food down. Thankfully, he got hooked up with several anti-nausea meds that have helped a lot since then. The second week was a short visit, and he felt good enough that week that we were even able to go on a walk on the canal one day. He did, however, end up having to go in for some transfusions on January 22 that perked him up for a few days. That's when we found out the great news that the hospital covid rule had finally changed, and I could start going with him to his appointments - yay!
He was kind enough to give me the full clinic experience during my first visit with him, and we ended up being there from 10am-8:30pm - as if Mondays don't already feel extra long! One thing we've learned is that hospital time is a whole other world. It typically takes at least an hour and a half just for Ryan to check in, get his vitals taken and blood drawn. He sees multiple nurses who drill him about his symptoms and medicines, a nutritionist who monitors his weight and diet, and then his primary doctor comes in to chat about any updates to the plan and give him the results from his blood tests that determine what the rest of the day will look like. Then he's moved to the infusion area, where he gets chemotherapy through his port, and any blood and platelet transfusions if needed. All of this to say, nothing on hospital time is quick.
In the middle of all of this, Ryan was asked to speak at a virtual event for Butler University Dance Marathon, a fundraising event we both participated in during our college years that raises money for Riley Hospital for Children. They usually bring in cute little kids to tell their Riley stories, so Ryan had a unique and somewhat full-circle perspective to share, as an atypical Riley patient and Butler alum.
On February 1, we went to the final appointment of consolidation, which was relatively short, with just one chemo and one unit of platelets. He's had an overall good week until today, when he woke up feeling anemic and ended up going in for transfusions. We're bummed he's feeling bad since we expected his counts to be on the upswing for the rest of this week. Now, as I write this, I'm sitting in the hospital with Ryan as he was admitted for the night after spiking a fever. They're monitoring him and giving him antibiotics to bring it down... not exactly a fun Friday night, but better for them to err on the side of caution with his counts being so low.
Now that he's through consolidation, Ryan will enter a new phase called "Interim Maintenance 1," which will last 9 weeks. During this phase, he will be admitted to the hospital for about 3 days at a time every 2 weeks. The chemo drug he will receive has to be administered over 24 hours, and then they have to monitor him until it's out of his system. Each of these admissions is count-dependent, so it's likely that there will be delays. Given his current state, the very first one will is already being pushed to next week.
After IM1, then he'll enter "Delayed Intensification" - another 8 weeks when he'll receive many of the same drugs he's had during consolidation (including the at-home shots I've been giving him... he's not too excited about that). They said the first month of that his counts will likely dip, but the second month might be a little easier.
Next, he'll enter 8 weeks of "Interim Maintenance 2," which is the same drug as IM1 except that he'll receive a smaller dose of the drug, so he won't need to be admitted. Then he'll have 2 weeks of daily cranial radiation, and then FINALLY he will enter "Maintenance," which will last almost 3 years. He'll still be going in monthly for blood tests and every 3 months for chemo, but he can hopefully get back to some normalcy starting late this summer.
To be honest, we were a bit shocked to learn about all of these phases after we had just been mustering the motivation to get through the last one. Even the "good weeks" are challenging, so looking 6 months out can be extremely overwhelming - especially with how isolated we've been due to the pandemic. But it is what it is. We just have to frame it that each one of these phases gives Ryan a better chance of getting back to living life and not looking back. For now, we're at the mercy of that pesky hospital time.
Many people have asked us if Ryan is on the shortlist for a covid vaccine. The answer is, unfortunately, no. His team has no concern about risks of cancer patients receiving a vaccine, however they aren't confident that it would be effective given that their bodies can't amount a full immune response. And since the vaccines are currently a scarce resource, they don't want to "waste" any doses when there are so many people who need them. So the doctor encouraged us to get them when we're eligible, but can't move us up in the queue. This was obviously disappointing news, as we were really hoping he could get vaccinated here soon and that would give us a little peace of mind.
That being said, if you are eligible and able to receive a vaccine, PLEASE get it. There are so many people like Ryan who are completely isolated right now and counting on other people to keep them safe, and it'll take everyone doing their part to stop this thing. Just in the past week there has been so much good news on the horizon thanks to incredible scientists and researchers, but it's up to all of us to actually put the science to use.
"I don't want to bother you..."
I can't even count the number of times we've heard this since Ryan's diagnosis, along with, "I don't want to make you sad," and, "I'm sure it's overwhelming with so many people reaching out." We have to laugh sometimes, because if everyone assumes that we don't want to be bothered... then no one reaches out. We're not the kind of people to expect everyone to drop what they're doing on our behalf. Ryan especially is not one to offer up unsolicited updates. BUT, think of it like this: this is the reality we are living every minute of every day, whether anyone asks or not. And it can feel pretty isolating to be the downers who bring it up in every conversation. Yes, it would be exhausting to repeat all of these updates to every person individually. But, dear loved ones, please do not hesitate to reach out for fear of bothering us. In a time when togetherness isn't really an option, moral support is the best thing we can ask for.
Thank you to everyone who has sent us food, said prayers, and checked in to see how we're doing. Please say an extra prayer that this hospital admission is a short one. We'll keep taking everything one day at a time and try to keep everyone updated. We love you all!