September is Childhood Cancer Awareness month and our color is gold. We gild our profile pictures and status updates in solidarity, driven to highlight the tiny warriors in our lives — the survivors, those still fighting and the dear ones we’ve lost.
The stories vary from child to child, family to family, connecting us from the moment we get that first, terrible diagnosis. They usually start with the words, “Your child has cancer.”
Ours started in 2012 with a stomachache and a tumor. It ended five years later with a funeral.
My family was initiated into this club seven Septembers ago. Back then, I thought I was aware. I thought donating to charities like the The Make-A-Wish® Foundation and St. Jude made me aware. I thought that since my younger daughter had been through three surgeries by the age of seven for her cleft lip and palate, I understood that kids get sick — sometimes, really sick. I’d walked my baby into surgery three times. I stayed with her in the hospital overnight three times. I thought I got it.
I was wrong.
Statistics don’t tell the whole story, not even close. What I want to do is make you aware — just a little bit — of what it’s like to watch your child live with this devastating illness.
It’s important to understand that cancer isn’t just one disease. Its many forms and iterations are as unique as the children who get it. Cancer plays out differently depending on the age of the child, the type of cancer, the stage of cancer and the prevalence of the disease. That last one is important, because rare cancers tend to have much lower survival rates than cancers with clinically proven protocols.
Many people think of leukemia as a curable cancer (I was among them before I met other parents whose children had died from various forms of leukemia). That’s because the statistics sound good, e.g., the five-year survival rate for acute lymphocytic leukemia is now about 90%.
However, the survival rate for juvenile myelomonocytic leukemia (a much rarer cancer) is only about 50%. I didn’t know this. I thought all leukemias were the same. At one point early in my daughter’s diagnosis, I wished that she’d had a cancer like leukemia because it was hard not to cling to that 90% survival rate statistic. Again, I was wrong. That statistic was misleading, as many grieving parents can attest to.
The disease trajectory for each child with cancer varies greatly. Some children get treatment, go into remission and grow up. Some children die within days, weeks or months of diagnosis. Some children, like my older daughter, Ana have cancers resistant to treatment and must go through years of different, invasive treatments before being categorized as terminal.
If you think the words, “Your child has cancer” are bad, try getting out of bed after your child’s oncologist says, “There’s nothing more we can do.”
For Ana, the disease became the defining characteristic of her childhood. Diagnosed at 11, she was just beginning adolescence when we discovered the tumor. She had clear memories of a time before she was sick — memories that faded with each passing year — but her formative adolescent years were dominated by her illness.
Cancer lingers. It forces you to change your life. It’s endless, intractable, and unyielding in its demands — these are things I didn’t understand before Ana’s diagnosis.
My limited experience with childhood cancer came from the brief glimpses I’d seen on the news or third hand, from people who posted fundraisers on social media. Communities rally around children who are newly diagnosed, supporting the family with prayers, money, and meals through the intense months of initial treatment, hospitalization and recovery.
Our children’s stories float into your awareness briefly, then swirl away again. I understand this. It’s impossible to live in a state of constant sorrow and near desperation if you don’t have to.
As I start a third September without Ana, it strikes me (yet again) how little I was aware of the hardship aspect of a disease that lasts for years. It’s not one trauma, it’s many.
There’s no getting over the fact that cancer took my daughter, robbing her of the chance to grow up. Cancer is still happening to my family. We’re still living with the reality that Ana is gone — that each season, each holiday, each birthday and all the small moments in between will happen without her.
“This sucks, but I don’t want it to end,” my husband once said when Ana was on hospice, and growing sicker by the day. For us, ending the day-to-day hardships of cancer meant living life without Ana. It was an impossible reality to grasp.
Ana’s last August alive had been a particularly rough one. She’d started a new oral chemotherapy medication — a last hope kind of thing — in combination with a medication she was already taking. The two potent drugs caused profound anemia to the extent that she needed a blood transfusion.
Because her body was so depleted, she got strep throat and was sick for weeks. Her mouth hurt from sores (a side effect of the medication). She was tired, weak, and frustrated. She wanted to travel, but we couldn’t go far. She wanted to see Iceland, Thailand, San Francisco, The Grand Canyon and so much more, but we had to stay in New York, close to her doctors and our support system.
We lived like that for months — in limbo. We were unable to plan or talk about the future. We could only watch through the lens of social media as other families taught their kids to drive, sent them off to college, traveled and celebrated all the milestones, large and small. Childhood cancer held my family hostage. Even now, more than two years after Ana’s death, we still act like captives, unable to fully break free from the trauma of watching Ana die.
My family lives differently now, but we haven’t stopped living. My younger daughter starts 10th grade in a few days. She’s as changed by losing her sister as I am, but she’s thriving. She loves art and music. She loves to decorate and redecorate her room. She’s focused on trying to keep our family whole.
Gold ribbons have an entirely new meaning for me these days — they are a reminder to cherish the moments and to share our children’s stories. They’re also a reminder that many families are still living the nightmare that we lived, preparing their children for surgery or a prolonged hospital stay instead of getting them ready to go back to school. To those families I want to say: you are not alone. I see you. I sat where you’re sitting and I am so sorry.