Maybe that'll be the next big Hallmark Christmas movie... no? Doesn't roll off the tongue? Well, anyway, this past week has been one for the books. This past Saturday, Ryan was feeling pretty rough all day, which we assumed was due to his blood counts dropping again. He ended up fainting twice, leading to a late night ER trip - another reminder of how lucky we are to live just five minutes from the hospital. It turns out that our assumption was correct, and he was extremely anemic due to all of his blood levels dropping even lower than they had been the week prior (when he got his first blood transfusions). After about 4 hours in the ER, around 3am, he was admitted to the hospital to get three transfusions - two units of red blood cells and a unit of platelets. Because of strict Covid rules, I wasn't allowed to come in with him once they transferred him to inpatient, so I came home and waited until he was finished 0n Sunday to pick him up.
On Monday morning, I dropped him off at his usual weekly clinic appointment. The unfortunate thing about being one of the only adults being treated at a children's hospital is that Ryan is one of very few patients who do not get to have anyone with them at their appointments due to Covid. It's getting harder for him to be there alone when he's exhausted and feels terrible, so we're trying to work with his doctors to get an exception to this rule. It's difficult for his family and me to get the information we need to care for him when one of us isn't there to help him navigate the long days at the hospital.
Going into this week's appointment, we were preparing ourselves for potential changes in the plan due to what had happened over the weekend. What was supposed to be a relatively short visit ended up being a full day from 9:30am-8:30pm, including a spinal tap, intrathecal chemo, two different IV chemos, and more blood transfusions. His blood counts were still low, but better than when he was at the ER, which is to be expected due to Sunday's transfusions.
This time they scheduled a follow up for Wednesday and when he went in his counts were still low, which meant - you guessed it - more transfusions. If you're praying for us, please say an extra one that he can make it through Christmas and to next Monday's appointment without having to go in again.
The good news:
Ryan's doctor is really encouraged by the state of the actual disease; they still see no signs of the cancer anywhere, so the treatments are still working. She explained that transfusions are a very common part of the treatment process, and most patients are expected to get them about every other week. However, the fact that he's had three this week is more than they would like, so they're working on figuring out what's causing the anemia to be so extreme. We keep having to remind ourselves that he feels like crap because the medicine is doing its job, not because of the cancer.
I think one of the hardest parts of this whole process is accepting a complete loss of control over pretty much everything. From the big stuff like wondering whether the treatment is working, to smaller things like not knowing when we'll have the time or energy to get our Christmas cards out, this is the ultimate exercise in patience and faith. It's a life lesson that I'm sure will come in handy later, but on top of the already uncertain nature of this year - and especially for someone like me who lives religiously by calendars and to-do lists - it doesn't feel great at the moment. One of the strange and positive things I've noticed, however, is that what counts as good and bad news has significantly changed. Priorities become significantly more clear and small victories are reason for celebration.
This has been a Christmas week unlike any other - and I know we're not alone in that. Sending love to all of you out there missing your typical holiday traditions with loved ones. We'll get through this. Stay safe and Merry Christmas!