A few days ago, I shared a statistic about ALL being the most common type of pediatric cancer. I shared about how I was made aware about childhood cancer before it came beating down our door. I want to tell you all how grateful I am to YOU for sharing your own stories and am humbled by how many of you stay with us here to learn and to share.
Today I want to talk a little more about that statistic because, well, it’s what I know intimately. I know leukemia and while I’m versed enough in other childhood cancers, this one I know (truthfully) more than I do my own health (type 1 diabetes.)
When Kate was diagnosed, after the first couple of days, there was not a single part of me that feared for her life. Arrogance, I suppose, but there was just something that shouted in my ear “settle…she will be okay.” Call it a mother’s intuition, call it being naive, I’m not sure. But I just felt it.
When Kate became ill roughly 3 months after her treatment ended and symptoms and signs were pointing toward relapse, there was a reasonable explanation for every single thing wrong. None of her symptoms were the same as when she’d been diagnosed years before…nothing alarmed anyone. Until it was too late. Even then. Even when I knew it had come screaming back into our lives, my fear was about how I would tell her she had to do it again – only this time, worse. How I was going to calm a scared, tired, fragile child and tell her “mommy will never leave you. You will beat this again.” She’d only just started to understand what happened to her in the first place. How would we, as a family survive this again?
Never. Never, ever did her life feel in jeopardy. Very sick? Yes. Frighteningly so? Yes. Even when the on-call oncologist said “we need to take her to the PICU and the next 24 hours are very critical” I did not stutter to think. Even as I typed those very words on Facebook to update our family & friends…I didn’t even realize what I was saying.
It never entered my mind that THIS would happen. She was Kate. She was OKAY just months ago. Perfect even. What happened? HOW SO FAST? Why didn’t my maternal instinct kick into high drive and ignore all the seemingly innocuous symptoms? I knew leukemia REALLY WELL.
This precise hindsight is what keeps me up at night. What keeps me from forgiving myself. Kate should not have died. And she (very nearly) did so on my watch.
Imagine your child is diagnosed with a cancer that, upon diagnosis, is terminal? What if you are given weeks, months, maybe even a year with your baby. YOUR Kate. And you have to just live…knowing the end would come?
Many of my friends lost their children due to the horrific treatments our kids face. Not Kate. She didn’t even get that far. She lost her life because the horrific treatments she was given DIDN’T WORK.
Is this unacceptable to you? It sure as hell is to me. Never in my wildest dreams would THIS be the place I go to take care of my baby. We tend to her grass, her flowers, her head stone. I polish it after they’ve cut the grass. I lay grass seed when there are patchy spots. I leave behind seasonal decor and I visit. A lot. I read to her and I buy her toys.
And each and EVERY time I walk away, I turn back and say “I’m sorry, Kate. Mommy didn’t know.”
Childhood cancer is not rare and THIS IS NOT OKAY. She deserved more than four years. More than four months off treatment. And more than four percent of funding for kids just like her.