The Storm

Phin and Aspen, Christmas 2023

Back in February, when we knew that Phin had relapsed, I looked for solace anywhere I might find some. One of the places I turned to for comfort was a dichotomy of sorts and well outside of my field of expertise: statistics. While I was never a true scholar in math and had been told time and time again that each case is different, the statistics seemed to paint a clear, unbiased picture of what we may face on our journey. Statistics wouldn't sugarcoat the grim possibilities. They'd "give it to me straight" in ways that people--complete with our compassion, love, and empathy--might not. They initially provided hope (for Phin's specific genetics, only about 20% of patients relapse after complete remission) and, also, fear (statistics had always suggested a 25-50% overall relapse rate for pediatric AML). I liked to believe that some of those numbers were big enough for Phin to fall into them; after all, someone had help make up that other percentage--the side we wanted to be on.

After the initial shock and devastation of his relapse wore off, I looked to our friends whose children had not relapsed, our friends who'd fallen into the percentages I'd hoped Phin had been in. I reasoned that we could muster up the strength to fight this battle again, to trudge through the trenches of trauma, despite the relentless torrents barraging down on us, holding onto whatever support and strength we could find, if it meant the others who'd walked beside us could stay put safely on the other side, waiting to help us back out when we finally returned to the light.

 

And how they've cheered at each victory, cried at each blow, prayed at every uncertainty. I've said in many ways and many times that throughout this stormy season of heartbreak, we've been able to keep our heads high and our walk steady, our spirits and lives afloat because of the endless, gentle sea of love and support our village has rocked us on, sheltering us from so many hard things, like so many steadying hands holding fast to our boat despite the storm battering us around.

Phin and Aspen, Pediatric Specialty Unit, 2022

If you followed Phin's story through the first part of his journey beginning in March 2022 when he was just four years old, then you know another one of the sources I sought solace: one of his--and our--closest friends Aspen Shaw and her family. Aspen had been diagnosed with AML a mere two months before Phin so when we arrived, full of fear and overwhelmed by the monstrous enemy we found ourselves facing, Brandi and Michael enveloped us in hope, certainty that despite the enormity of the Goliath before us, our 3 and 4 year old Davids would overcome. During those dark early days after Phin's initial diagnosis and again when he relapsed, I could hear Brandi's words echo in my mind: "One day this will all just be a blip in the story of their lives". I found comfort, renewed energy in her optimistic perspective that each new cycle took us closer to the end. 

And then, after months of isolation, we finally reached the end, at opposite corners of the Pediatric Special Unit where Phin and Aspen counted down to the day they would ring the bell--together. One right after the next, they walked alongside their Beads of Courage, a chronologically organized chain of beads Brandi and I had helped them string together that told the story of their fight against cancer. The entire unit celebrated--residents and attending doctors, nurses, environmental services, nutritionists, other patients, family and friends. How the confetti showered down! The world--all of you--celebrated with us. Tears of joy and relief, our babies came home to their waiting families and we waded quietly back into our lives--gratefully, cautiously. 

Phin and Aspen after they rang the bell, Aug. 17, 2022

For the last two years, we've relished in their health, each new milestone, each clean complete blood count (CBC). In some way, during the terrible season we'd weathered together, Phin and Aspen had become all of ours--the Michaels, the Shaws--united. It was hard to envision any medical victory without both of them winning together, hard to even say one's name without the other in the context of clinic or cancer. With each visit to the hospital, we'd text to update one another. When Phin relapsed, the Shaws were some of the first to know. They mourned, prayed desperately, cried along with us. Our pain has been theirs. Despite this, we knew--and were glad--that this part of Phin's journey we'd have to go alone. The path has been lonelier, harder this time, but the Shaws have been here cheering, waiting to help pull us back into the light behind the storm.

Phin and Aspen, Dec. 2023

Two weeks ago, Obelia came to Atlanta to be with Phin, two of our three children had reunited, and it really felt like the storm around us had begun to subside; we basked in our children's joyous laughter, piercing like rays of sunshine through the darkened clouds. I remembered Phin's words, what seemed like ages ago as we drove away from his school for the last time before he was admitted to the hospital, a tempest raging around us as we crossed the bridge leaving Tybee and his little voice--full of so much hope and innocence saying: "Mama, look! Behind the storm there is light!" And it really felt, for the first time in a long time, like I could see that golden aura ahead, peeking like a halo around the edges of those blackened clouds that hung over us for months.

Oct. 2023, LLS Heroes

But the text message on my phone, like a flash of lightning, said: "Relapse."

The bolt of a text message said: "Aspen."

And the thunder rumbled darker around us.

And the tears, like torrents of rain, began to pour down again.

And, just when we thought it might end, the storm picked up speed, and fury, and treachery with a vengeance.

And we start this journey again, the light still there, just farther.

Aspen needs us. All of us. Phin said, at his worst, he felt "scared and weak". He does not want any of this for Aspen. He knows, we must now be their hope, be their strength, inch back into the blackness and shine our light for her to follow through this storm where we will stand waiting to guide her out of the trenches, out of the darkness, to pull her back into the light where they will emerge. Phin and Aspen: together.

Phin and Aspen, Dec. 2022

I publish this on the eve of a big day for both of our families. Tomorrow, Monday, April 16, Aspen's twin siblings will be HLA tested in their search for a bone marrow match. In the morning, Phin will undergo his day +45 bone marrow biopsy to determine how much percentage of his marrow is his donor's. We are hoping--praying--in both cases, the statistics stack in their favor; we are hoping for nothing but 100% from here on out.