This is a guest post by a friend. When asked if she wanted to write about childhood cancer for the awareness month, September, this is what she had to say:
There was a sense of sacredness this morning as I poured my coffee. It was an expensive brand I normally don’t get, but Amazon, in their amazingness, had sent us a childhood cancer care package with a little something for Mommy too.
[Disclaimer: This post contains affiliate links, including some from Amazon, meaning I may be compensated in way that does not affect how much you pay for an item you decide to purchase. All opinions and recommendations are my own and 100% sincere.]
My oldest was asleep and my youngest was content with giving her ponies a bath in the sink, so all was quiet, for at least a few minutes. I poured into the cup I normally reserve for inpatient hospital stays because it’s the largest one I have. The coffee at the hospital is really weak, so I make up for it by drinking gallons. At least it’s free on the cancer ward!
This morning I need my largest cup to handle two sick children—one with cancer and one with a stomach bug—and a sick husband. I also need a cookie.
I’ve struggled for a week with how to write this. I kept thinking of all different ways to present my life, as the mother of a child with cancer. My favorite was a lighthearted approach, but with serious undertones, to childhood cancer myths.
Like all children with cancer lose their hair. They don’t all go bald, by the way. Only certain types of chemo cause alopecia, and radiation only sometimes causes hair loss. But that still didn’t sit right with me.
After several days of wondering and wrestling, I finally realized the problem.
Ultimately, I’m trying to make you care.
You, reading this right now on your phone or computer screen. How can I make you care? I have sad pictures and sad stories and heartfelt pleas. I have funny hospital anecdotes and the antics of my hilarious three-year-old warrior princess. I have a list of myths compiled by myself and other cancer moms. I have the facts, the lists of chemotherapy drugs and side effects.
But using any or all of that feels wrong. It feels wrong to intentionally try to manipulate you into caring.
The media has bombarded us with cute smiling kids getting the keys to the city through Make-A-Wish, or grinning while they play at St. Jude’s. We see The Fault in Our Stars and cry at the sad story. It’s not hard to make people have emotions about childhood cancer. It’s sad. Sick kids are sad; that’s inescapable.
It’s hard to make people act.
It’s hard to make people do something about it. Something meaningful, like getting on the bone marrow donation registry. Like donating blood. Like donating platelets. Like spending the time and money and effort to do a fundraiser for cancer research. Caring in an actionable way is exhausting. You feel it in your bones. It’s hard.
I can’t write this without including at least a few facts and myths, but now that you know my heart, I hope you are spurred on to action with this new knowledge. That you let it make you uncomfortable. Let yourself feel the despair and unfairness.
The three biggest myths of childhood cancer concern money, friends, and never-ending battles.
Many of the costs of childhood cancer are hidden. It’s not just medical bills.
It’s time lost from work and gas money. It’s doubling your water bill because now you must be obsessively clean with showers, running the dishwasher, and running the washing machine. It’s buying food for hospital stays and grabbing fast food between doctor appointments. Wearing out a set of tires in one year with driving to another city for treatment. Hiring an exterminator because the occasional stray bug is now a major infection concern.
Empathy is better than pep talks. Sit with us in the pain. We know that there will be light and laughter again one day. But it’s not here today, and we need to feel heard and understood in the dark places. These cards by Emily McDowell are an amazing place to start. One states “I know this day really sucks for you. I’m thinking of you.”
Once a child is diagnosed with cancer, the battle never ends. Children are not done developing, so the chemotherapy will have lifelong effects on their bodies.
Relapse will always be a specter haunting them, as will secondary cancers. They will be followed by specialists for the rest of their lives.
Cancer families often become frustrated that the world is so eager to see the children as “cured.” They are not “cured” until five years after they end treatment.
For my own daughter, she will be nine.
She was diagnosed at one. Even after that landmark, they will watch for learning disabilities, infertility, delayed or early puberty, diabetes, and host of other “late effects,” or side effects that take years to show up. Cancer is forever.
But for now, I am so thankful for the little things that make life easier. Free coffee, weak or not. An evening with other cancer moms to laugh and cry over the battle for our children’s lives. A healthy spouse and an amazing big brother to our cancer warrior. A care package from Amazon. A call from a friend.
My family has joined an exclusive club that no one wants to be in, and it has taught us both how to handle debilitating sorrow and how to see the incredible joy in everyday life.
I hope now you can be a part of alleviating that sorrow, or spreading that joy. Donate blood, so families don’t have to worry about the blood bank running low. Help fund research so childhood cancer can discover new, less toxic options. Or bring a box of toys to your local children’s hospital to help brighten their day.
Even small acts can strengthen our reserves to continue the fight for another day.