I'm not sure how many times as a child I recited that prayer at bedtime with my grandmother. Too many to count. It was ceremonial in some ways. A nice transition from day to bedtime. But with a child's heart and eyes, death is not usually as much of a reality in your day to day prayers. That part was just a few words of the poem I said by memory as I drifted into dreamland without many cares...calm and peace. This year, closer to the reality of life's cyclical nature then I care to be, forced into the places of my mind where life with Wil could be shorter than I had hoped, pieces of me glued together more by faith then ever before...death is not something my mind and heart can completely escape on any given day. That luxury vanished the day he admitted to UTSW and his leukemia was confirmed.
As I reread that, I hope you can see the light that lies in that darkness. Fear is full of faith these days because knowing the house of cards could fall any which way makes me feel nervous...yet, in some capacity it also lets me know exactly what I hope for at my core and what I value. Sometimes darkness allows you to hyperfocus on a singular light that would otherwise get missed.
As I spend another afternoon watching Wil drift into sleep, day +31 post transplant, day 39 of his inpatient round, another half dozen pictures taken on my phone of him zonked out peacefully on Benadryl, platelets dripping into his body, the words of this prayer are on my heart again. He always looks so small in the hospital beds....when he is larger than life in my world. That prayer...We are certainly still here, living out another day...but searching for guidance.
In the past 18 hours, our soul's have been cracked wide open once again in this journey. We had been waiting for test results, to see what percentage of Wil's DNA makeup was recipient vs. donor. A few weeks ago it was 50/50. For weeks now he has had low counts, 0 neutrophils, and a ANC that wouldn't budge above .1. With haploid (50%) donor matches, engrafting takes longer than other transplants. Our team has told us to breathe, the day is coming. Any. Day. Now. But as this week started to come to a close, I could see their expressions changing. Their words remained constant--"We aren't worried yet. It will happen." But the careful crafting of their answers to include "we aren't there yet" when we asked what if's was clear--this was taking longer than they expected.
But we enjoyed many walks down the locked unit corridor in the past few days. Wil and I have had the mantra...the day is coming. We have done neutrophil dances, looked at pictures of cells, written "dream of neutrophils" on his marker board. We have both been in fairly good spirits, trusting of this process, knowing good will come. We have slept, both of us, a lot. We have had peace.
Physically, other than having no immune system, not being able to sufficiently make his own blood, battling nausea, and having his first hives from transfusions, the week has been medically stable. There have been no signs of GvHD. No infections. He can walk down the hall, shower himself, and chat up the staff. Really and truly these are daily miracles and factors that can change in a moment. We don't take them for granted for even a minute.
18 hours ago though...Wil texted me while I was at work. "Can you talk? So the results are in..."
My heart raced, we had been waiting for a positive increase in donor cells. "...the percentage of donor cells dropped to 5%. Looks like my body rejected his cells." My heart sank. Nearly ineveitable graft failure.
Side note: Only about 5% of people don't engraft. There is no fault or blame to place anywhere. Sometimes, it just happens. We are now part of that sometimes for some people. Oh Wil, my sweet, rare bird.
I ducked out into the hall, for a minute to quietly call the man who is my daily hero, my life line, and my everything. He said, "You know how we joked I better not still be here for the season premiere of The Walking Dead?" I knew where he was going with that statement.
And so began another trip down "rare complication lane," complete with an open ended hospital stay. With no immune system and almost daily blood products, he just can't come home.
The usual sounds of my work life felt deafening last night. I kept my shit together though, focusing on making it out the door and to my car, where I knew the eventual heart break would stream out of me. And so I drove the 30 miles home, clouded contacts stuck to my salty eyes, collapsed on the couch and gave space for the new evolving reality--the transplant didn't work. My hubby has no immune system defense and will keep getting blood transfusions to simply keep him alive and going. The anti-everythings (virals, bacterials, etc) will continue to pump and hopefully keep him from a fatal infection while we wait. I don't really come to a place of questioning "why?" these days. I do find myself in a state of wonder--wondering how this new piece, this new chapter, will play out...and wondering how I will keep it together. It always comes together, this I know, but it's a scary jump into what appears to be a bottomless hole of unknowns.
Wil had his break during rounds today. (I guess if you are going to get bad news, at least we got to have it from the Italian attending--middle aged, kind, thick accent, and full of food metaphors, something I can appreciate!) I can hold it all together so elegantly at times, but the sight of my grieving husband, hunched over in tears, the weight of ridiculous guilt he carries because he somehow takes responsibility for the "failure"--it's an ugly cry moment. His only concern? It should be his life. Instead, like always, it's everyone else. He feels he has inconvienced everyone around him, and especially his donor. His heart is larger than his chest can hold most days. I want to tell him to focus all energy on him. But concern about others...sigh...That is part of his DNA I don't need a blood test to prove.
The plan stands as this: The best option is to get more donor cells to do another transplant or "boost" as they are calling it. Another day 0. A few more days of cream corn smell. More prayers, hopes, and wishes for life outside of room 813 at some point...and most importantly, more days together. In the meantime--we wait. We try to keep him healthy and active and in good spirits.
Moving pieces galore. Depedency on relationships at every turn. If only he had a cancer where medicine was enough to depend on, but blood cancers...it takes another person to save him.
Mercy. Grace. There is reason in this chaos. There is power in thoughtful tears and soulful prayers, and comfort in holding his hand as he cries. And him holding mine back. I'm certain I will enjoy every day I can squeeze out of him for as long as I can, in between a few rants and break downs I suppose. We are strongly whole, and human, in the infinite ways our feelings converge along the way. It just doesn't make the walk any easier. But him? I'd walk it everytime with this man.
A friend had recently posted a question on Facebook: "Three things the you of today would tell the you of 20 years ago." I would have been 16, taking classes at Rochester Community College. A wee baby who never planned to get married earlier than 30 and wanted to travel and live all over the world. I had planned to write an entire blog on that subject. But as the post came back up in my feed last night, tears streamed and I sobbed. I don't need 3. There is only thing I would tell myself: It will be worth it. All of it. Success, failure, trials, leaps, falls, heartaches, missed opportunities, redefined dreams...because it all lead to him and to this crazy moment. It's been worth it, every time.
And so the adventure continues...I pray for days, but even more I pray The Lord to guide the ways of all involved.
Oh, Jenny. My heart breaks for you. Just breaks. All I can really say is "Mercy. Grace. There is reason in this chaos." It is impossible to find that reason at times because it is not OUR reason. But there is mercy. There is grace. There is reason. And maybe most importantly, there is love. I hope you feel it around you now, even as it feels like everything has come crashing down. But the love is always there. We all wish we could say or do more for you both. But there is love.
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