There is a general inequality in the world of cancers. For instance, everything in the United States goes pink in October for breast cancer awareness. Everyone owns a pink ribbon of some sort. I, for example, have two identical cups and a keychain supporting breast cancer awareness. Why doesn’t the country go gold for pediatric cancer in September? While parents are grieving the loss of their child from cancer, or still fighting the unimaginable battle, while our entire world has gone gold and all we see is childhood cancer day in and day out, we are already seeing the rest of the world go pink in the month that is supposed to be dedicated to our children. Maybe it’s because childhood cancer is a hard reality to face and it makes people uncomfortable. But until people will move past their discomfort, we are fighting this battle alone.
Breast cancer associations receive a substantial amount of donations annually. At Stage 0 and Stage I, breast cancer is 100% curable; at Stage II the survival rate is 93%; at Stage III the survival rate is 72%; at Stage IV the survival rate is 22%. Therefore, the real goal with breast cancer awareness should be education and early detection. But when it comes to breast cancer awareness, we are all quite pink and quite aware. Just a few weeks ago, I went with my girlfriend to get our nails done in between preparations for her son’s funeral. When I told the woman at the shop her son passed away from cancer at twelve years old, she said, “I didn’t know kids could get cancer.” I’m not going to say I haven’t randomly been inclined to yell, “Kids get cancer, too!” to strangers walking passed me on the street. No one should have to fight alone.
With childhood cancers, the problems are vast. To start, it is largely unknown why children get these cancers. A very small percentage are linked to known genetic mutations. Since environmental factors would be difficult to determine at such a young age, little is known about the causes. Without being able to predict childhood cancers, and with very little able to be done about detection (most childhood cancers are not diagnosed until they have progressed so far that the symptoms are very evident), the only realistic solutions for the time being are cures. The childhood cancers with the best prognosis, like some types of leukemia, have the best cure rates because adult research and cures have been able to be crossed over into the childhood diagnoses. For many childhood cancers, there is a very low survival rate or a terminal diagnosis at the onset.
Some of the facts about childhood cancers are obvious. Like the fact that a young child is unable to be reasoned with, and cannot understand why they’re being poked and prodded, being hurt, held down, and tortured by the very people who are supposed to love and protect them. We all know that chemotherapy makes you sick. But many of the protocols children undergo would kill a healthy adult. The harshness of these protocols is evident. Children are up all hours of the day and night, vomiting, crying, and anxious. A stroll down the hall of a children’s chemo ward lends a sense of disbelief at the amount of suffering.
You have to wear gloves to change your baby’s diaper since chemotherapy, even the trace amounts found in their urine, can cause cancer. Speaking of that, many of these poor children do in fact get later cancers from the very treatment meant to cure their current cancer. Babies end up with diaper rashes from the harsh chemotherapy that cause open wounds, severe pain, and permanent skin damage. Many toddlers have difficulties with things like potty training or interacting with other children. Even older children often revert back to diapers. They have anger issues and behavioral problems, and there is no way to differentiate between a lack of discipline or the many mind and mood-altering drugs they are being given. Most brain tumor patients also end up with brain damage and seizures. Children of all ages can become wheelchair-bound. The side effects of chemotherapy range from profuse vomiting to long term nerve damage and severe neuropathy pain. Full cranial and spinal radiation causes irreparable and severe brain damage. Due to behavioral and medical issues, many cannot be reintegrated into daycare or school. This means no going back to work, and no income in a single parent household.
Another thing you might not know is that childhood cancer is not as rare as you might think. 1 in 333 children will be diagnosed with cancer before the age of 19. The average age of diagnosis is 6, and the average age of death is 8. The survivors are likely to suffer neurocognitive and physical deficits that keep them from participating in school, social activities, and eventually work. This can lead to isolation and depression. Nearly 40% of survivors will suffer life-threatening illnesses as a result of their original treatment. They are likely to be immunosuppressed for the remainder of their lives. They might suffer from growth and endocrine problems, as well as infertility and organ damage. They will have difficulty obtaining health and life insurance. Many have trouble with basic math, reading, telling time, or even talking. Almost 75% of childhood cancer survivors will suffer from chronic illnesses. 1/5 of children diagnosed with cancer will die within 5 years, and 1/3 will not live out their full life expectancy. In other words: childhood cancer is not just about cute bald kids!
Parents become nurses. If our children are lucky enough to be sent home in between treatments, we are expected to do things we never imagined we could do. We are taught to access a port (the implant placed near a child’s heart to administer chemo directly through the arteries because it is so toxic it would blow their veins). We are expected to prepare and administer nutrition drips, and sometimes medications, through this port. We learn how to use those machines that were once just hospital scene backdrops in movies about sick people. We learn how to “bag” a child who has stopped breathing. We learn how to do “neuro checks” to ensure their pupils aren’t fixed by lifting their eyelids and shining a light into their eyes all hours of the night while they sleep. We learn to go days without sleep, watching to make sure they’re still breathing. Then, eventually, we learn how to seem normal again. Well, some of us do. Many carry symptoms of severe PTSD with them for the rest of their lives. Some of us relearn to go through the motions; although our “normal” will never be what it once was.
While the average years lost in adult cancers averages 15, the average years lost in pediatric cancers averages 71. Still, childhood cancer research receives only 4% of federal cancer research funding! For some of us, there are privately funded Godsends like St. Jude, where a patient never receives a bill. But only a select few make it into the research protocols there. All around the United States, children are being turned away from potentially life-saving treatments due to lack of financial resources. If you think Medicaid is going to pay for the Temodar most often used to treat my daughter’s diagnosis, think again. Children are dying because their parents are not rich! That’s a soul-awakening reality.
They say it takes a village. Let’s be that village. No one should ever have to fight alone.
For more childhood cancer information, please visit dahliastrong.org.