My son, Cameron, eighteen months old at the time, was halfway through his radiation treatments. He had a big swath of angry, hairless scalp from his left eyebrow to the middle of his head, above his left ear to the back of his neck. Gleaming red, his radiation burn stood in stark contrast to his blonde hair and pale blue eyes. He didn’t complain. Sometimes he scratched at it.
In an attempt to extract what positivity we could from the situation (away in Boston for two months with a disabled cancer-fighting toddler), we accepted an offer for a whale watching boat tour. A handful of our fellow cancer kid residents came with us.
The sweetest of these was a little girl whose name I will leave out, for the sake of her family’s privacy. But she left a mark on my heart.
We sat on the boat, Cameron in my lap happily waving to strangers, oblivious to their stares, when the girl approached. With her wide eyes, and calm, soft smile, it was hard to imagine she also had a tumor in her brain. But I had seen her burn. When she lifted her thick black hair, the bottom half of her scalp was angry and bare. It marked where the cell-destroying protons had poured into her young body over and over again.
She walked right up to Cam and gently touched his inflamed skin. She didn’t ask if it hurt, or if it burned. She already knew. Cam smiled and gave her a high five.
“Tell him to put the air conditioner on it,” she said.
I laughed, then looked into her dark eyes more closely. She was serious. This sweet girl was helping her friend, giving him tips on how to manage his pain. Real advice, from a fellow warrior. No child should know these things.
I nodded solemnly and told her, “Thank you. I’ll let him know.”
That little girl died last month.
I’d only seen her once more since that summer, when she and her family were visiting our Children’s Hospital in Colorado. Her tumor had relapsed – again – and Cam was getting his routine check-up MRI. Her mother and I found each other in the lobby, and spent a few precious moments catching up, promising to keep in touch. But I saw the fear in her eyes. It’s a fear we shared, though her nightmare has since come true and mine still hovers at the edges.
Now today, how do I go about my business, shopping for groceries and drinking coffee, charging my phone and putting the dogs outside when some other mother – a friend, no less – is mourning the death of her child?
When is it my turn? The thought occurs, unbidden, and I feel guilty. My friend, a fellow mother who loved her daughter no less than I love my son- it’s her time to grieve. Cameron is still here. It’s my turn to offer words of support, then hug my son and cry into his hair, to be thankful his body is still warm and that hope is still an option.
No one fought as hard as this little girl’s mother. She did everything right. Advocated. Researched. Sacrificed. That innocent girl, with the big heart and the big eyes, spent her whole life in hospitals, recovering from surgeries and treatments, moving from state to state, chasing medical trials.
Was it all for nothing? She won’t get to grow up!
Isn’t that the goal…to see your beautiful, brilliant, loving child grow into a long life of his or her own? If that doesn’t happen, was it worth even trying?
I haven’t been able to speak directly with my friend since she lost her sweet girl. Her family and friends have rallied, and I wait on the sidelines for any weak but well-intentioned help I can offer.
When Cam is older, he will hear about this girl, and see photos of the time they spent together. He won’t remember the solid advice he got that day on the whale watch boat, but I will. Her short life and tragic, useless death will remind me to be brave and kind, reach out to those who need help and never, ever take your loved ones for granted.
I wish I had known her better. I wish she had gotten to grow up and be a part of this world that needs more compassion and empathy.
She left the world a better place than when she found it.
That’s more than most of us can hope for.