girl drew

It’s been one week since we said goodbye to Ramón, and it’s been more than 14 weeks since I said farewell to the version of Ramón I’d known since December 2011. In many ways, I’ve been grieving since April, but the sorrow has taken a different shape now, knowing that the possibility of recovery no longer remains. At times, this materializes as feelings of relief, since the clarity for which I’d longed has arrived and is indisputable. However, other times I miss the ambiguity of where we were because it included space for potential and opportunity. And hope. Although the past week has been heavy, it’s also been magically light due to the outpouring of love. I’ve connected with friends from many walks of life, I’ve heard from people whose lives were better off because of Ramón, and I’ve even linked up with strangers who happened upon my posts online. Despite the irrefutable absence that unexpectedly reveals itself throughout the days, the moments have been woven together by undeniable fe...

Many of you have followed our story and its constant ups and downs, particularly since Ramón’s chemo/radiation/transplant complication-induced cardiac arrest on April 19, 2020. Though it felt like we’d finally settled into an “up” after a tumultuous three months, Ramón died yesterday at 10:52 a.m. Things were going well [enough] until suddenly they weren’t. A respiratory event yesterday morning led to yet another cardiac episode and, though we hoped to sustain Ramón’s life long enough for his family to get to town, it didn’t unfold that way. So, lying in an ICU bed with Ramón, I held onto him as tight as possible until they said I had to go. Every muscle in my body aches today, but that’s the price I paid to send him off in the midst of a massive hug. Ramón’s family in Michigan joined us via video as we reminded him just how much we loved him. As we finished saying our goodbyes, he was clinging to life with the help of very advanced life support. When we told the medical team it ...

Holy Day +100 since Ramón’s transplant! Exactly 100 days ago, on April 10, Ramón received his stem cell transplant. From 11:25 a.m. to 12:10 p.m. ET, we quietly watched YuSun’s stem cells slowly assume residence in Ramón’s body, ready to evict his leukemia once and for all.  I’d heard about the coveted Day +100, and now we’re here. We have taken some major detours, but we made it! When a transplant recipient hits Day +100, the window of greatest risk closes, and the donor stem cells should be forming new blood cells. Leading up to transplant, I recall a moment when Ramón looked me straight in the eyes and said, with absolute conviction, “I just know this transplant is going to work.” I could tell he believed it with every ounce of his body, and I did, too. So far, he’s been right about the transplant.  Tests around Day +30 and Day +60 indicated that the transplant was successful. Did you know that Ramón’s blood DNA was replaced by his sister’s? So, if he were to get a...

A good day, from morning to sunset Yesterday was Ramón’s 100th consecutive day in the hospital. Though each individual day has felt exhaustingly long, the days have merged together in a way that seems like no time has passed. Despite all of the twists and turns that led us here, it was a good day. Some days feel like setbacks, and I find myself actively inventorying what’s wrong with this situation. However, day 100 was the best day I’ve had in quite a while; instead of focusing on what’s absent, I concentrated on what’s right here in front of me. In the early hours of the day, when I should have been sleeping, I checked on Ramón and was taken aback by how beautifully peaceful he looked. Excluding the headband, he looked just like he always does at home when I stare at him in the night like a total creep. The moment felt significant for reasons I can’t explain; something just felt very perfect. Then, when I got up for the day, I asked the nurse to bring me coffee (not because ...

*Full disclosure: I'm backdating this post because I was too tired to post it the day I wrote it. Then I completely forgot.* “I’m not going to wear my ring, okay?” I remember Ramón asking that as we did one last sweep of the house before departing for the hospital on April 3. Now, 90 days later, Ramón’s left hand remains ringless; instead he’s wearing a pulse oximeter. Above his wrist, there’s a peripheral IV. Above that, there’s a PICC line that’s being removed today. On a whim one afternoon in May 2015, Ramón asked if I wanted to go ring shopping. We had this conversation often, and I finally agreed that day. After looking at a few antique stores, a cashier suggested a family-owned jeweler that was nearby, so we headed that direction. We sat in the car in the jewelry store parking lot while I unhooked my IV antibiotic from my PICC line. My lungs were acting up, so I was doing a round of two different IV antibiotics to whip them into shape. When we entered the store, the...