Day +0: A cup of hope
April 10, 2020
Thank you for all the ways you've been #RootingforRamon! The transplant went off without a hitch, and we've already walked a few laps, watched an awful movie, and napped. We'll be sipping from our cup of hope as YuSun's cells boss Ramón around (as all good sisters should) in the coming weeks. Big days, weeks, and months ahead!
Day +1: What the hiccup?
April 11, 2020
Today is a good day in that it has a plus sign in front of it. Hooray! Given COVID-19 and the havoc it's wreaking on our healthcare system, we were anxious leading up to the transplant date, knowing that the landscape was changing day by day. But we're here, the transplant is done, and Ramón's new cells are working to make themselves at home. Change into your comfiest sweatpants, cells; you're here to stay!
Now, for the not-so-sunshiny part: it has been a rough day for Ramón. He's been fighting nausea most of the day, and we haven't yet figured out the perfect medication combo to keep it under control. Ramón also has frequent bouts of impressively loud and robust hiccups, so that's causing discomfort as well. During some of his better moments, we've walked six hallway laps. I'm hoping we get a few more in tonight.
We knew this was going to be tough, and my goal for tomorrow is to be more proactive in managing Ramón's side effects. To put it plainly, today sucked. But the downs are what help make the ups more meaningful. Here's to a better Day +2!
Day +2: A hare better
April 12, 2020
Today was better than yesterday in that Ramón's nausea was mostly kept at bay. We haven't yet figured out how to contain these rowdy hiccups, but he's had some stints without them, so let's hope those become more frequent. Ramón's on a few different medications that should help, but the doctor said the hiccups would pass and would just be "damn annoying" (his words) in the meantime.
We did just shy of 12 laps today, so that was an improvement. As we hiccupped down the halls, Ramón received a few southern condolences: "bless your heart" and "poor thing." But we avoided any near run-ins since everyone could hear us approaching.
Ramón has been running a fever, so they started him on an IV antibiotic to be safe. He got up to 103F today, but he's down to 100F now. The nurse said this was common and she'd be surprised if he wasn't running a fever. We're just hoping it breaks soon so he's more comfortable.
Tomorrow morning Ramón has more chemo, so he'll be hooked up to IV meds/fluids continuously until sometime Wednesday. Let's hope this chemo is gentle on him, though we know we're not yet in "the basement" -- the term they use for the period at which his counts are the lowest. Those days are coming, but if we get his symptoms effectively managed by then, hopefully they'll be very doable.
Hopping along...
Day +3: Much more cowbell
April 13, 2020
First, let me disclose that this photo is the first we took post-transplant on April 10. It looks much less hot-messish than anything I could have documented from today.
I'll keep it short because I am majorly sleep deprived, but Ramón's fever escalated throughout the night, topping out at 106.9F. I didn't even know that was possible, but it is. He's been in the 106- point-something arena many times today.
There was a period this morning when Ramón was feeling really well. We did seven laps before noon, which was great. When I went into the hallway solo, the nurses whispered to me about his lack of hiccups; we were all so excited!
So, naturally, we reentered Hiccuptown around 1:00 this afternoon, and Ramón hiccupped every four seconds for more than four hours. My heart broke because even the hiccups sounded exhausted. Finally, between 5:00 and 5:30 p.m., they stopped! It was a joyous time, but they've now been back for more than an hour. The doctors are still trying to identify and treat the cause, and I think we're getting closer.
Today Ramón got one dose of chemo, meaning he has one remaining tomorrow. Hopefully his last chemo dose EVER! Ramón also got a unit of blood because his values were pretty low. Lastly, he acquired some new medical décor in the form of another IV line (a PICC) placed in his arm so his anti-rejection med can have its own line when he starts it Wednesday.
If Ramón can get through the night without being covered in ice packs at any point, I'll consider the night victorious.
Day +4: Toci Tuesday
April 14, 2020
Do you want the good news or bad news first? Let's go with bad so we can end on a positive note. Last night was a total trainwreck. Ramón ended up running 106-107F fevers that he simply couldn't shake. Actually, he was shaking a lot, yet the fevers persisted.
Next, Ramón's blood pressure dropped to 80/40 and his heart rate skyrocketed to 142 (he was asleep, might I add). Nothing indicated he had an infection driving the fevers. After some phone calls and powwows, the doctors ended up giving him an immunosuppressant called Tocilizumab. They determined his symptoms were a result of cytokine release syndrome (CRS), which is apparently common in haploidentical transplants like his. (Fun fact: Just the other day I read an article about Tocilizumab being used in COVID-19 patients.)
So now to the good news! After taking the immunosuppressant, he's been fever-free all day. The hiccups are another story, but we're slowly eliminating his sources of discomfort. Ramón finished chemo today and starts some new meds tomorrow to try to prevent drama between the old and new cells. We only did three laps today, but that's three more than zero.
Pictured is our dear senior Magpie. We can't wait until the day we're home to see her less-than-pleased expressions in person.
