Showing posts from April, 2020

Day +18: Still dancing

Thank you all for helping make my birthday special. Though a big part of my heart was missing, my heart was warmed every time I received a birthday wish, a candle photo, or a donation to the CFF. The greatest gift of all … drumroll … was that I got to go see Ramón in the hospital. He was sedated, but I got some solid hand squeezes at the best possible times. I also left a playlist of his favorite songs, and I heard his music in the background when the doctor Facetimed me yesterday.

It was a sad, beautiful, difficult, and amazing day, but it was also a hope-y birthday. As of yesterday, we still hadn’t seen any change in his white blood cell count, so turn up the music and dance like you’ve got nothing to lose. When I was with him in-person on Sunday, I told him he simply wouldn’t believe the amount of support he has. I’m holding on to my rope of hope, understanding that each day brings Ramón closer to healing. And, in moments when I feel like a candle in the wind, I know I’m surrounded…

Day +15: Light and love

I’m updating to let you know that there’s not much of an update. The doctors think Ramón’s airway closed due to an infection just above his voice box, combined with throat inflammation caused by the radiation he received before transplant (a common side effect). Because his immune system was intentionally wiped out for transplant, the swelling can’t resolve until his white blood cells start regenerating. And, without addressing the swelling, the doctors don’t feel comfortable removing the ventilator and therefore can’t turn down the sedation much more. This is about the time the doctors expect to see Ramón’s counts coming up, so do your white blood cell dance for encouragement.

We also know that, during any cardiac arrest, the brain often goes without its full supply of oxygen for a time. The neurologist says it’s too early to hypothesize what this might mean for Ramón specifically since he’s still sedated. Though they can do some basic imaging while under sedation, there’s not much v…

Day +12: A turtle's pace

Though time has been moving at the speed of molasses, it’s moving, and that’s the most important part of this process. The testing they’ve been able to do while Ramón is sedated and intubated all looks quite positive. Until they can fully wake him, though, there will be some unknowns. Yesterday around noon they started the awakening process, but it will happen gradually and safely, so it could be a number of days. 

Around this time last year, Ramón and I were hiking at Turtletown Falls in Tennessee, and cancer was nowhere in the mix. Yesterday I found myself Facetiming with my sedated husband. I reminded him how many people love him and are pulling for him, and I let him know that we’re not stopping. 
Although we’re in a holding pattern now, we should know more in the coming days. So, let’s keep rooting while Ramón is rebooting. 

Day +9: Cloud not-so-nine

Today has been, by far, the scariest day of my life. This morning, at about 5:25, Ramón lost his airway, most likely due to swelling caused by an infection or allergic reaction. He went into cardiac arrest and ultimately had to be resuscitated. During the process, Ramón had to be intubated. He is now sedated and on a ventilator in the ICU. I was required to leave due to the ICU’s no visitor policy, but I was able to hold his hand before I left, and I am grasping onto that memory until I’m able to return.

As traumatic as the day has been, the updates I’ve received have been encouraging thus far. Though Ramón is expected to remain on the ventilator for several days, they’ve gradually (and successfully) moved him down to the lowest setting throughout the day. He is requiring very little heart support at this time, which is a drastic improvement from this morning. The doctors are very encouraged that the first 12 hours have gone as smoothly as they have.

They’ve cooled his body down (ther…

Day +8: Doggie doo

Breaking news: Ramon still feels pretty crappy. His counts should start recovering in the next several days, we hope. I’d love for it to be tomorrow, but I don’t want to get greedy. Once Ramon’s white blood cells start coming in, we should see a lot of improvement. Bring ‘em on!

Today was tough, but thankfully Ramon got some much-needed rest. We did half of a lap, but Ramon just wasn’t up to it. I tried my best to keep myself busy, but I did have my moments of simply staring at him while feeling hopeless. It’s very difficult to watch a person suffer; it hurts all the way to my core.

I’ll end on three good things that happened today:

Our buddy from food services saw me walking in the hallway and gave me a packet of Jelly Bellies. There was no rhyme or reason; he was just spreading joy."One of Ramon’s colleagues posted photos of her children in Share Love, That’s All shirts. This particular family knows all too well how much cancer sucks, and it was uplifting to see them support a c…

Day +7: The sky's the limit

Whew. Today has been up pretty high on the “hard” scale. A trip to the bathroom at 4:00 a.m. yielded a small battle scene. Ramón’s PICC (a long-term IV running to a large vein in his chest) got tangled up in his IV pole and managed to escape his arm entirely. Because his platelet count was so low and his blood was slow to clot, this resulted in three nurses cleaning up while a literal sandbag was placed on his arm to apply pressure and stop the bleeding. Then he got a unit of platelets. Rise and shine.

Ramón’s throat pain is still quite severe, and that has been our biggest challenge. Hiccups who? We’re still working to make him comfortable, but his symptoms will likely last until his white blood cell count starts to recover, enabling him to heal. It’s brutal to watch the torture he experiences merely swallowing water. Please let the healing come as quickly as possible.

Through his pain, Ramón and I managed to walk 32 laps together – about three miles. Around lap 13 or 14, we passed t…

Day +6: Swallowing pride

Today has been a painful day for Ramón, but we’re ending the night on a pretty good note. Until we were thrown into this cancer fiasco, I’ll admit I didn’t know much about the details of chemo or radiation. However, both treatments aim to target rapidly dividing cells, ideally the cancerous kind. The body has many other types of rapidly dividing cells, though, like cells in hair follicles – hence hair loss – and the digestive tract.

Though we all know Ramón would have a luscious head of hair if not for the cancer, today he’s been struggling with the digestive tract side of things. His mouth and throat are very sore and painful, so we’ve been working to address that for most of the day. After what felt like many strikes, we’ve finally hit on some effective ways to keep Ramón comfortable. Since his white blood cell count is undetectable, this issue won’t resolve itself as quickly as we’d like. So, the goal is pain management until he can begin healing on his own.

Despite excruciating ag…

Day +5: Window of opportunity

It’s been a while since I’ve said this, but we had a good day! Though we’ve had glimpses throughout the days, I can officially say that today, as a whole, was good. The highlights include fewer bouts of extreme hiccups, being fever free the entire day, and walking a whopping 20 laps – a vast improvement from yesterday’s three.

Ramón started two planned immunosuppressants today, and we didn’t notice any adverse reactions. He’ll be on one of the meds for about a month (CellCept) and the other for at least 100 days (Prograf). Ramón also started Neupogen injections, which should boost his immune system. It’s an interesting shift because now, instead of actively trying to fight leukemia, the goal is to make sure the cells play nice. The most common post-transplant complication is graft versus host disease (GVHD), a condition where the new cells accidentally start attacking the recipient's healthy cells. Let’s hope that, before we know it, all the cells are singing kumbaya in unison – m…

Day +4: Toci Tuesday

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…

Day +3: Much more cowbell

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 tryi…

Day +2: A hare better

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…

Day +1: What the hiccup?

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 pla…

One sunset at a time

It’s our third night in the hospital, and we just witnessed the best sunset so far – a Fight Like Mike sunset. Throughout Ramón’s cancer treatment, I’ve shared the story of our friends Lindsey and Mike and their efforts to Share Love, That’s All. Last Sunday, after valiantly combating leukemia for four years, Mike peacefully passed away in his sleep. You can read more about Mike’s life here. Although we are admittedly sad, we continue to be inspired by him, especially as we venture into the unfamiliar world of transplant.

It’s day -5, which means transplant is a mere five days away. Ramón has one more dose of chemo tonight, and tomorrow he begins his first of four days of total body irradiation twice daily. We don’t yet know how he’ll respond to this, so send some love his way. We’re hoping for as few side effects as possible before Friday’s transplant.

All we need now is your positivity! An amazing friend is staying with the dogs at our house, so they’re all taken care of for the mo…