In late July, Ky and I met with a new oncologist. We’d known for a while that his care was going to be transferred from Dr. Weiss, the pediatric oncologist who had been our steady from literally the first moments of Ky’s diagnosis. The separation was bittersweet. Ky loves Dr. Weiss. I love Dr. Weiss. But leaving his watchful eye meant something special. Ky’s care was being handed over to the survivorship side of Maine Children’s Cancer Program. This was the day I had waited for since the moment we found out Ky had leukemia.
I remember, shortly after returning home from Ky’s transplant in Boston, calling his doctor there to go over an odd lab report. One of his levels was off and, for the life of me, I couldn’t stop thinking about it. I worried it was the first marker of relapse, the first sign that, in the dark recesses of his body, one little cell waited out the chemo. The doctor reassured me that things were okay, that a relapse wouldn’t look like that, told me to try to focus on the child in front of me, not the numbers; he would worry about those. “When can I breathe again?” I asked him. It was a serious question. I remember the silence as he drew a breath, then the crackle as he exhaled, “Good question. If he makes it to the three year anniversary of his transplant without issue, you can take a breath. But also, in my experience, you’ll never totally exhale. That isn’t how it works for the parents of pediatric patients.” I sat on the bathroom floor, tracing the design on the vinyl flooring with my finger. Three years and never. The countdown began that day.
On that late July day, we sat in a room at MCCP. We were only a few weeks from the three year anniversary. A nurse reviewed Ky’s pertinent medical information with us. We had always had access to social workers during Ky’s inpatient and outpatient work with MCCP, but Ky rarely engaged unless he was sharing something with them that he wanted to do for other kids. That day, though, for reasons I may never understand, he engaged with the social worker. She marveled at his strength and asked him what it meant to him to be a cancer survivor. At that, my eyes filled with tears. I tried not to look up. I didn’t want him to see that or feel the weight of my emotion. I heard his voice begin “To me, it was just an experience I went through. I don’t think it stuck to me like it did other people.” At that, our eyes met.
On the way home, I asked Ky more about the question the social worker asked. He looked out the window and said “I didn’t do anything, Mama. I laid in a hospital bed. The nurses, the doctors, the medicine…that’s what did it. I just laid there. I didn’t fight a battle. I waited for science to help me. Science fought the battle.” His answer was so practical it moved me to immediate frustration. “Part of that is true, Ky. Nurses, doctors, and medicine did part of your healing. But your spirit – that had to be strong, too. You had to believe in your nurses and doctors and medicine, but you also had to believe in you. It’s more than science.” He remained unconvinced.
On August 17, we low-key celebrated the third anniversary of his transplant. I let him sleep in and, when I heard him stirring, I went in and wished him a happy third birthday. He smiled and rolled out of bed, into the day ahead. I took stock of him all day. Three years. Here we were. It stuck to me.
Today marks the three year anniversary of our return home from Boston. Three years. And now, forward to never.
Cheers to you, Cappy – my boy who believes in science. Love, your mama – who will always believe in you.
“Let us run with endurance the race that is set before us.” Hebrews 12:1
4 thoughts on “Forward To Never”
❤️ Tears as always with your beautiful words and Kyan’s beautiful soul.
Your writing always touches me (you have such a gift!), but this one was raw and emotional. Cheers to you both on a hard earned milestone…just breathe.
Congratulations Kyan and to your family. I cant believe it’s been 3 years already. I’m sure it seems like forever to you!! Way to hang in there, Mom! You’re an inspiration to us all. Hope we can see Kyan at Santa’s Village this year. We can celebrate with him then.
Love and prayers
Eileen Gavron (Emma’s mom)