The “C” word is a word that carries a lot of pain and heartache. It carries rounds of toxic chemicals, years of pain, heartaches, and a whole basket of side effects. Cancer is something that as an adult, you fear. You see the death that surrounds it and you understand that you don’t want it. But, when you are a child, cancer is just a word. Cancer is not on your mind because you are thinking when the next time you can ride your bike or play with your friends outside. As a parent, you are not scared of your child catching a “cancer bug” because it is so rare, right?
Wrong.
Every day 43 children are diagnosed with cancer. Cancer is the #1 disease killer in children 18 and younger. You never think that your child could be one of those 43 until you are sitting in a doctor office after a routine checkup with your child, and the pediatrician tells you that your child has a life-threatening disease with no cure.
That is the part that upsets me the most: “no cure”. There is no cure, no miracle drug, and no painless treatment. There are only months and even years of painful injections, drugs, and side effects. Instead, of a child playing outside, they sit in a hospital room worrying about doing their CHG wipes, getting their counts up, taking bad-tasting medicine, and being hooked up to an IV pole all the time.
I spend a great deal of time being treated at Children’s Healthcare of Atlanta, and while there I have met so many kids and teens and their parents, who one day had to learn what WBC, RBC, HGB, HCT, Platelet, T-Cells, B-Cells, and lymphocytes all mean and what they stand for and why paying attention to them is now so vital. No kid should have to worry about their lymphocyte counts when they can barely count to ten.
It is now 2016 and so little funding goes to fund childhood cancer research. Childhood cancer is treated like adult cancer and that makes no sense. Children have different needs and how has no one found something to cure cancer but we have hoverboards, iPhones that can pay bills, and drones?
No one wants to talk about childhood cancer because it is a sad topic, but that is how we are going to find a cure. There are doctors and nurses and scientists who devote their entire lives to improving the lives of children with cancer and we still only have poison as a “remedy” to stop the growth of metastasizing cells.
To have cancer is not just a diagnosis, it is a lifetime of checkups, medications, needles, and chronic problems because just because the cancer is in remission, there are still so many side effects of chemo and radiation that can be just as bad. Your life stops when you get that diagnosis, your child stops school, you stop working, and suddenly you go into mountains of medical debt to save a life.
While I have been at Children’s Healthcare of Atlanta as a patient, nonprofit leader, and a shadow student, I have met many patients there. But one sticks out to me in particular. Her name is Maylee and she is fighting AML (acute myeloid leukemia). Maylee is about to turn four years old and she is on her third round of chemo. Maylee is #toofiestyforcancer and she is strongest little girl I've ever seen. Maylee loves Disney's Frozen and she likes to ride her Frozen scooter around her hospital room while she is telling everyone in the room to play with her. She likes Legos and she likes to play with animals, and she likes to go down to the fish tank and watch the fish swim through their tank in the hospital. She also likes to play hide and seek with me in the hospital gift shop. She is a child who knows all too well the pains of being sick.
When I went to see her this week in the Aflac Cancer Center and Blood Disorder wing, her mom told me she hates hearing the Code Blue sound (as do I). Instead of falling asleep to music or someone reading her a story (which I am sure they do that too), Maylee has to listen to doctors and nurses running about and be terrified of hearing a code blue call.
This has to change, we have to raise awareness for childhood cancer. We have to let kids be kids again. We cannot stop until there a 100% survival rate because no child or parent should ever have to endure this diagnosis. The “cancer bug,” as Maylee calls it, needs to go away for good and that cannot happen without everyone’s help.
Never stop raising awareness, because there is ALWAYS hope.
Keep fighting, my little bug, we will have a cure one day.
“And though she be but little, she is fierce” –William Shakespeare
