September is Childhood Cancer Awareness month. Before the month comes to an end, I want to paint a picture of the realities of childhood cancer. Too often kids with cancer are shown as cute kids with bald heads. That is only a small fraction of what childhood cancer is.
Childhood cancer, at least in my experience, is:
- Putting your entire life on standby, because cancer treatment is the top priority.
- Watching your already small child lose muscle mass, and becoming rail thin.
- Having to dig out old clothes you thought had been outgrown because your child is now smaller.
- Seeing all of your child’s hair fall out in clumps. All of it. No more eyelashes. No more eye brows. And a mostly bald head that has a few stringy patches of hair that managed to hold tight.
- Cleaning vomit out of clothes, sheets, carseats, strollers, shoes, and furniture.
- Learning the sound of the pre-vomit retch so well you can catch the first vomit if you can get a container fast enough.
- Carrying a vomit bag with you everywhere you go. Not as a safety measure in case your child feels queazy, but for the inevitable public vomiting display. And then telling onlookers it’s not a GI bug, your child isn’t contagious, it’s just chemo puke.
- Feeding your child through a tube that enters their nose and stops at the stomach because they no longer have interest in eating.
- Watching your child mostly nap. Playing requires more energy than they have most of the time, so napping and snuggling becomes their favorite past time.
- Keeping a hospital bag packed at all times because you never know when you will need to be readmitted.
- Wondering how adults manage to work while going through chemo or hide their cancer, because your child can barely stay out of the hospital while in chemo. And then remembering the chemo course given to children is more aggressive than the treatment given to adults.
- Watching you child be brave and endure more needles and tubes than any child should have to experience, ever.
- Spending more time in the hospital than home and losing large gaps of your own life.
- Knowing the oncology unit is just one step down from the ICU. And an adverse event — like a tumor bleed that requires emergency surgery, or sudden difficulty breathing — might be just around the corner.
- Having to dig out old clothes you thought had been outgrown because your child is now smaller.
- Seeing all of your child’s hair fall out in clumps. All of it. No more eyelashes. Mo more eye brows. And mostly bald head that has a few stringy patches of hair that managed to hold tight.
- Cleaning vomit out of clothes, sheets, carseats, strollers, shoes, and furniture.
- Learning the sound of the pre-vomit retch so well you can catch the fort vomit if you can get a container fast enough.
- Carrying a vomit bag with you everywhere you go. No as a safety measure, but for the inevitable public vomit. And then telling onlookers it’s not a GI bug, it’s chemo puke.
- Feeding your child through a tube that enters their nose and stops at the stomach because they no longer have interest in eating.
- Watching your child mostly nap. Playing requires more energy than they have most of the time, so napping md snuggling you becomes their favorite past time.
- Watching your previously energetic, athletic child stop walking. Independent mobility hurts and just isn’t worth it.
- Keeping a hospital bag packed at all times because you never know when you will need to be readmitted.
- Wondering how adults manage to work while going through chemo or hide their cancer, because your child can barely stay out of the hospital while in chemo. And then remembering the chemo course given to children is more aggressive than the treatment given to adults.
- Spending more time in the hospital than home.
- Knowing the oncology world is just once step down from the ICU. And an adverse event — like a tumor bleed that requires emergency surgery — might be just around the corner.
- Turning your home into a hospital-like environment with feeding pumps, IV antibiotics, IV nutrition, and IV fluids.
- Agreeing to treatment knowing some of the side effects could kill or permanently alter your child, but the cancer left untreated definitely will kill your child. Side effects like:
- Heart damage
- Secondary cancer
- Hearing loss.
- Learning your child’s chemo recovery pattern better than their treatment team. Knowing ANC levels, monocytes, platelet counts, etc.
- Having a wave of panic anytime there is a disaster (or pandemic) because that puts a strain on blood bank donations and your child needs transfusions regularly.
- Being thankful for the good days while knowing it is only temporary.
- Knowing how real scanxiety is.
- Knowing the end of treatment isn’t the actual end of all fears.
Momming: the Good, the Bad, and the Ugly 