One Year of Leukemia

It’s been exactly one year since Liam was first diagnosed with cancer. One year since we heard the oncologist’s words crash over us.

“Liam has leukemia.”

“What?! Are you sure?”

“Yes, we’re sure. I’m so sorry.”

I remember feeling my body crumble into my husband as he stood, rigid from shock. I wept uncontrollably into his chest as the doctor quietly stepped back to honor our first encounter with grief. A nurse nearby continued typing on the computer, undisturbed or apparently accustomed to heartbreaking scenes in the hallways of the pediatric intensive care unit. After several minutes, I pulled myself up and took a breath, dizzy and nauseous, as the doctor led us to a private meeting room to further discuss Liam’s illness. 

Nothing in that conversation could have prepared me for what awaited us. In the months that followed, it seemed like everything that could go wrong did go wrong. Leukemia wasn’t what I expected. It was worse.

How does one face the fragility of life head on? No one is equipped to watch their child suffer. Cancer families are not automatically endowed with some herculean strength to endure it. People often tell me that I am strong, but it couldn’t be further from the truth.

Having a child with cancer doesn’t feel like being strong. It feels like watching my baby getting pummeled to death, and not being able to save him from it. It’s seeing my little one be slowly poisoned by chemotherapy until his hair falls out. It’s helping him vomit day and night for months at a time. It’s watching his little body deteriorate and change shape, from swollen and bloated to skin and bones. It’s holding him down as he screams during painful procedures, unable to understand why someone is hurting him. It’s seeing him hooked up to oxygen because he can’t breathe on his own. It’s watching him lose the ability to walk because his muscles have atrophied from being bedridden. It’s infection after infection threatening to take his life and keep us from going home. It’s training to be a nurse so that I can give him medical care when we finally leave the hospital. It’s long term side effects and PTSD and the ongoing need for physical therapy. It’s so many things that no child should ever have to endure.

When I reflect on this past year of intense treatment and constant infections, I almost can’t believe it actually happened. And yet, when you enter the world of childhood illness, there is always someone worse off than you. Every week during physical therapy, I breathe a silent prayer of thanks that at least Liam isn’t as debilitated as some of the other kids there. If anyone has been following our blog since the beginning, you may remember that we met a sweet 4-year-old girl with an extremely rare form of leukemia. Her family was in the room next to us when Liam got diagnosed. A couple of months later, we were in the room next to her when she passed away. 

How does one speak to such unspeakable pain? Any short answer platitudes fall flat and empty before this great enemy of suffering. What sort of consolation can hold its weight against this terrible opponent? Is there any hope in the midst of tragedy?

This past year, it wasn’t an optimistic outlook or my own strength that got me through. It was experiencing a Strength outside of myself that could hold me, a Goodness that could bring joy in the midst of pain, a Light that could defy all darkness, a Creator God who was weaving this tapestry of grace and repurposing every ounce of pain to tell a story that is beautiful and powerful and good. 

Cancer is encountering God’s tangible comfort. It’s a communion with Him that can only be known in the depths of brokenness. It’s experiencing the blessing of community meeting our needs and being the hands and feet of Jesus. It’s witnessing the overwhelming generosity of friends and strangers. It’s learning to cherish every moment as a family, a gift not to be taken for granted. It’s watching Liam learn to walk again, become his old self again, and graciously forget a lot of the trauma that his five-year-old body has endured. It’s learning that sorrow and joy can coexist. It’s leaning into God’s overarching plan of redemption.

As I’ve mourned our portion of the brokenness of this world, these truths have kept me anchored and caused me to press on. I have come to further know Jesus, the Man of Sorrow who was deeply acquainted with His own grief, the One who could be intimately present with me in my pain because he chose to experience it Himself. His wounds invite me to trust Him on this path of suffering, and they remind me that, one day, it will all be worth it.

Below are some pictures from this past year in chronological order.