Day +12: A turtle's pace
April 22, 2020
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 +15: Light and love
April 25, 2020
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 value in speculating until Ramón is awake. So, again, do another round of the white blood cell dance because that’s ultimately what’s causing the wait.
I’ve been able to Facetime with him at least once a day since Tuesday, and sometimes he’s been more alert than others, depending on the level of sedation. I played one of our favorite songs for him, and his eyes opened wide. When we Facetimed yesterday, Ramón was under additional sedation for an EEG. He was pretty much asleep the entire call, but I played him some music and, like clockwork, a person walked by the house, which caused our little dog, Benny, to howl like crazy. The doctor called later to tell me that Ramón’s EEG went a little wild during Benny’s howling. The doctor was chuckling, too, because the EEG also spiked when I told Ramón he’s asleep half the time I’m talking to him anyway.
Tomorrow’s my birthday, and it obviously doesn’t feel like a very celebratory time. As I was looking back at photos, I found this one from my birthday in 2013. I love it because, though the photo is dark, the light draws your focus. Although it’s a bit of a dark time, I’m doing my best to live in the light. For my birthday, it would mean a lot to me if you’d light a candle for Ramón and spend some time sending healing energy his way. And, if you feel inspired, I’m still doing my usual birthday thing: http://fightcf.cff.org/goto/drew. I constantly remind Ramón how many people are in his corner, so keep rooting.
Day +18: Still dancing
April 28, 2020
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 by candles that can bring my flame back to life.
