Fourteen years ago today, McKenna died.
(Trigger warning for families and fellow cancer parents.)
For days, we had been watching McKenna fade. She couldn’t walk anymore, couldn’t move much, and couldn’t talk. Her once-strong body—so full of life, running across soccer fields and flipping on the beam—had become still. She couldn’t eat or drink. Her eyes stayed closed, and we didn’t know if she could still see. We spent those days holding her, reading her favorite books, and sitting with her in the sun, hoping she could still feel its warmth. We didn’t know when the end would come—only that it was close.
That morning, we let Jordan stay home from junior guards. McKenna was lying in our bed. I left Jordan and Hanah—who was like a sister to our girls—to spend some time alone with her, just in case they had anything they wanted to say without an adult around. Not long after, they came to get me. McKenna was breathing differently. She had aspirated.
Even now, it’s hard to explain the fear and heartbreak of that moment. We had a suction machine, and our dear friend Jen, a nurse, used it to help. A hospice nurse arrived by chance. But at that point, there was nothing anyone could do. The disease had taken control.
I had avoided learning what the end might be like. I didn’t want to fill my head with images of death while McKenna was still alive. But it wouldn’t have made a difference. Nothing could have prepared me for the pain of holding my child as she died—almost in the same position I had held her when she was born. That first time, I used all my strength to bring her into the world. And now, I used every bit of my being trying to keep her with us, while also wanting her to be free from her suffering.
I felt every breath shake through her body. I felt her heart slowing under my hands. I listened as family and friends told her they loved her and said goodbye. I didn’t know if she could hear us, or if she was in pain. I knew she must be scared, and I couldn’t take that fear away. And when her body finally gave up—when the fight was over and we had to let go—I watched Dave carry her out of our room to the waiting van, after we had made the decision to donate her brain and spinal cord for research. That was the last time we saw her.
I’ve learned to protect my emotions. I don’t let myself go back to that day very often—it’s too painful. The guilt, the sadness, the helplessness are still too much. But I remember it now for McKenna, and for every child who hasn’t yet been diagnosed.
This is why we’ve kept fighting. No child or family should have to go through this. DIPG is cruel. It doesn’t care who you are. It attacks the brain and slowly takes away every function—one by one.
When McKenna was diagnosed, we knew almost nothing. Today, while there’s still no cure, we know a lot more. That knowledge is giving some families more time, new hope, and more options. But that progress is at risk. Funding is not guaranteed, and some researchers may lose their jobs.
We’ve made progress, but there’s still a long way to go. Now the fight is in our hands—parents, doctors, scientists, and supporters. We are a strong and united group. We’ve already made a difference. But we can’t stop now—we need your help to keep going.
Today, please think of McKenna. Think of every child who faces this disease. Please stand with us—to support, to speak up, and to share—so that one day, this terrible illness won’t mean a child has to die.
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