I work in health care and deal daily in the unexpected. I’ve seen tough things happen to good people. I know that illness, and cancer especially, sometimes chooses its victims at random. Still, nothing prepared me for having our beautiful, sweet infant daughter diagnosed with cancer.
“Babies don’t get cancer,” I thought. But they do, and ours did. Our precious Aili (pronounced EYE-Lee), then only an infant, was diagnosed with stage 3 intermediate-risk neuroblastoma, with a large tumor compressing her airway, wrapping her carotid artery and spreading through her neck into her chest.
Thanks to the excellent team of oncologists, surgeons and nurses at Children’s Hospitals and Clinics of Minnesota, our family is blessed to say that Aili is still with us.
Every day, seven families in the U.S. say goodbye to their precious child due to cancer and its complications, and another 46 children are diagnosed and begin to walk a terrifying and painful journey.
Aili’s treatment — a combination of chemotherapy and surgical tumor resection — gave us the hard-won miracle of modern medicine: Our 2-year-old daughter is surviving cancer. “Cancer-free” is a term that sticks funny in my mouth; it’s misleading. Our family isn’t free, not really. No child survivor is truly free.
Aili’s future and her long-term health remain significantly at risk, not just from future cancers but also the long-term effects of her chemotherapy and surgery. Chemo often causes major medical problems years down the road. Adults often reach their elderly years before those problems develop; child survivors encounter problems in their 20s and 30s, big-deal problems like heart failure and additional cancers.
But we are surviving.
She is surviving.
The complications of her tumor and treatments make our days more challenging, but she is generous with her smiles and eager to explore this great world. She loves her brother and her family. She cheers wildly when she sees puppies, puddles, or babies. She’s a huge fan, it turns out, of politicians’ portraits (she is all-partisan, by the way). She lights up for back-to-school photos on Facebook, dances in the grocery store, and sings unabashedly to the echoing stalls of public restrooms.
We love when you celebrate her, ask about her health, ask us how we are doing. Be prepared for honest answers. We don’t know how to sugarcoat this for you, and we aren’t trying to make you feel awkward by talking about our baby with cancer. We don’t expect you to know what to say. We still don’t know what to say, either.
One in 300.
That’s as common as twins!
Childhood cancer is not rare; it’s the leading cause of disease-related death in children.
Each day, I honor all of the little fighters out there waging heroic battles with tiny bodies. My heart and soul, scarred as they may be from watching my family and so many others suffer from this terrible disease, alight with joy that we’ve been graced with this precious child. This girl — our girl — and every other child out there deserve more than just your awareness. They deserve to be celebrated and supported, cheered on, held and comforted.
There are so many ways to help families with a child with cancer:
- Run a 5K in support of the cause, donate money toward cancer research, or find a local nonprofit. In Minnesota, we have great groups, including Children’s Cancer Kids Fund, that provide financial assistance to families affected by childhood cancer.
- Attend a benefit — you don’t need to know the family, just trust me; your presence and support would mean the world.
- Make a meal for a family in need, wash and fold a load of laundry, or even unload their dishwasher. That time that you commit allows valuable time for their family to be together. (And can I give you some more unsolicited advice on behalf of special-needs families? Make a specific offer — because as many times as you tell us to “call if we need anything” — we won’t call. We feel like we shouldn’t burden you with our problems. Asking what time this week you can offer your services is much more likely to elicit a family’s acceptance of your help.)
I know we all lead busy lives, and it’s so easy to scurry about in our own little worlds, but there are so many children affected by this disease. Childhood Cancer Awareness Month is in September, but for some families it’s every month. It’s every day, and it’s the rest of their lives.
Kelly Kleven, of Duluth, is a physician assistant and mother of a childhood-cancer survivor.