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Why Doesn't Pediatric Cancer Get The Attention It Deserves?

Talia Pisano stands in her bed at Lurie Children's Hospital on June 11, 2015. Talia is getting tough treatment for kidney cancer. She's also getting a chance at having babies of her own someday. To battle infertility sometimes caused by cancer treatment, some hospitals are trying a new approach: freezing immature ovary and testes tissue, with hopes of being able to put it back when patients reach adulthood and want to start families. (Christian K. Lee/AP)
Talia Pisano stands in her bed at Lurie Children's Hospital on June 11, 2015. Talia is getting tough treatment for kidney cancer. She's also getting a chance at having babies of her own someday. To battle infertility sometimes caused by cancer treatment, some hospitals are trying a new approach: freezing immature ovary and testes tissue, with hopes of being able to put it back when patients reach adulthood and want to start families. (Christian K. Lee/AP)

September is Childhood Cancer Awareness Month. You probably didn’t even realize that because by mid-month, the world has already turned pink to commemorate October's Breast Cancer Awareness Month. Celebrities don’t wear the gold ribbon, which is the symbol of awareness for pediatric cancer. There are no beauty products at the department store with a gold ribbon — or packaged foods and fashion merchandise turned gold. Yet, more than 1,000 parents will hear the words “Your child has cancer” this month alone.

Maybe the gold ribbon isn’t everywhere in September because most choose to look away. Perhaps it is too painful to imagine a child fighting cancer. I don’t blame them. But I didn’t have the choice to look away when my 7-month-old son was diagnosed with acute myeloid leukemia. So for those of you who don’t know, or are afraid to ask, this is what happens when your child gets diagnosed with cancer.

I didn’t have the choice to look away when my 7-month-old son was diagnosed with acute myeloid leukemia.

You freeze in fear and for a second you think the doctor has it wrong. Your child could not be sick with cancer. That only happens to old people. You hold your child so tightly fearing there will be a day you can no longer touch him. Will he die? I wondered this so many times over the course of treatment.

Then the very next day your tiny hospital room fills with doctors and nurses. You fill out paperwork, sign consent forms, and before you know it — your child has a temporary line that will ultimately allow for the constant flow of chemotherapy to kill the cancer. It will also kill off any and all healthy cells too, but you don’t know that yet.

Then you are off, instantly your world changes and your new reality becomes chemo side effects, fevers, trips to the operating room, CT scans and a ridiculous amount of antibiotics. Gone are the girl’s nights out, coffee dates, school conferences — and your smile.

Enduring the nightmare of cancer is difficult at best for adults. Watching your child endure the worst pain and suffering of their life as you sit helplessly by is a nightmare.

If your child is lucky enough to make it through treatment — and by that I mean, if the chemotherapy doesn't kill them — you make it home, the place you longed for so badly while living in the hospital as you slept on a small pull out chair listening to the sounds of IV pumps and heart rate monitors going off every 15 minutes. But home is different somehow. Life is different. Your family is different. What happened?

Cancer happened.

You’ve heard the phrase “cancer sucks!” It's true, it does. But the ugly truth is that cancer takes away the bliss of life. It takes away friendships. It steals your ability to trust that things will be OK. It makes you feel edgy and isolated.

This September, take action. Don’t choose to look away.

Over time, this pain lessens and life settles into a new normal. Time is what eases the loss of the life you knew before cancer showed up uninvited. A cure is what we all hope for. Sadly, many don’t get here. And anyway, a cure doesn't mean freedom from the nightmare. A cure is basically a statistic saying the chance of relapse is further away. A cure doesn't mean you don’t worry constantly. At check ups, you still hold your breathe while the doctor reads the recent blood work results. A cure is a gift, which we must accept and cherish. It means don’t forget the past, but take back what is yours. Your life, your smile, your child’s laugh, their friends — take them all back and go with gusto. Find your new normal, and live it.

Live life, love others and forgive them for letting you down while you lived in the hospital. They could never have known what you were going through.

Don’t harbor frustration or anger that retailers, celebrities and social media have forgotten all about the gold ribbon. Just focus on what you can do to raise awareness and to help others that are going through it. This September, take action. Don’t choose to look away.

Nobody knows better than a parent of a child who fought cancer that tomorrow is not a promise. Live today.

Related:

Headshot of Ashley Haseotes

Ashley Haseotes Cognoscenti contributor
Ashley Haseotes is the president and founder of One Mission, the kids cancer support foundation.

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