Part 2 can be found here.
Here we are again, back in the city of brotherly love. To be honest, it always feels a little bit like coming home when we arrive in Philly. The body finding its ways inside of sustained trauma. It looks for comforts and familiarities. Our plane lands in Philly and I recognize it’s the same gate we normally fly in and out of and remember that the bathroom is just past the coffee shop on the right. We get the rental car and I can effectively make it to our apartment without a map. The clerk at the store is short with me, what in Colorado would be considered rude, and I think, “Ahh, yes, Philly.”
It’s growing on me, this place.
This week Beaudin had a 4-day chemotherapy regimen to prepare his body for more HuCarT cells on Monday. The regimen is chemos: Cyclophosphamide (Cytoxan) and Fludarabine on Days 1 & 2 and just Fludarabine on Days 3 & 4. Because Cyclophosphamide (Cytoxan) is so taxing on the kidneys, Days 1 & 2 also include a 30″ pre-chemo saline bolus and 3 hours of post-chemo hydration.
The regimen is designed for the initial infusion of t-cells and for that has two motives. One is to clear out any remaining cancer, and two, as is the case for Beau, to clear out all healthy b-cells so that the t-cells have more room to expand. Since Beaudin remains cancer free, the reason for the chemo for him is just to clear out his b-cells, making room for the t-cells to expand.
Monday and Tuesday was 4.5 hours of chemo, plus 30 min for labs, and a 30 min clinic visit which somehow made for 8.5 hour days. Mainly because hospital time is not linear. Wednesday and Thursday were closer to 4 hours.
Monday and Tuesday Beaudin felt really crappy from the chemo. With Wednesday morning probably being the worst. Couple two extra long hospital days with waking up super nauseous and let’s just say there were a lot of tears to get us out the door that morning. He also chooses to get accessed and de-accessed each clinic visit (because he doesn’t prefer to sleep with his port accessed.) and that adds angst to each day. Finally on Wednesday, I was able to talk him in to staying accessed overnight and despite being a bit uncomfortable he was very thankful for have one less access/de-access.
We are staying at the same place we stayed this spring, The AKA, and it’s nice to feel the creature comforts of an apartment that we are familiar with. Beaudin really likes this place and asked specifically that we stay here, instead of our previous airbnb in the city center. I’m thankful that despite the chaos that is this back and forth slog across the country, Beaudin is eager to come, enjoys Philly, and regards it fondly. I can’t imagine this with the added layer of him being obstinate about it.
We have seen a couple of familiar faces at the hospital, including our favorite nurse, Preetha. Beaudin, who doesn’t show physical affection often, embraces her in a “so long it gets awkward” hug each time he sees her. There is something about her that really comforts him.
The chemo from this week will tank Beaudin’s counts and render him with absolutely no functioning immune system. I can already tell his counts are bottoming out because when I ask him to do anything, the answer is always that he ‘doesn’t feel like it.’ When his counts are low, specifically his ANC at zero, he has no energy to do anything. Couple that with the weather here which is cold, but more impactfully: really windy, and I don’t much leverage I have to get him out of the house.
“Beau, I know you feel terrible and weak, but it’s frigid and blustery outside- let’s walk to the coffee shop, and you can wait outside while I get us stuff- and then we can walk back home in the cold.”
As such, we are just hanging in our apartment. It’s rather boring, but we find a way. Yesterday I went to Target and picked up a bunch of random crafts, legos, paints, puzzles, etc. Hopefully those will keep us busy for the next couple weeks.
On Monday Beau will get his t-cells, then we will be waiting and watching for a reaction until Day 10. With re-infusion, they expect reaction to be minimal, but we all know that anything can happen.
Hope you all have a good weekend, I will hopefully update more next week.