It’s Past Time to Get Angry About Childhood Cancer

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Wayland Whitten

Childhood cancer is the LEADING cause of death by disease in children in the U.S. Take a moment to really let that sink in. There are no vaccines for childhood cancer and there is no way to protect our children from it. It is the most substantial threat to children everywhere.

One out of every 285 children in the U.S. is diagnosed with cancer before the age of 20. In fact, it is estimated that there are 250,000+ new cases of childhood cancer worldwide every year. That is almost 700 new kids affected every single day!!

Two thirds (95%) of those who survive childhood cancer will have lasting chronic conditions just from the treatment itself. They have almost twice as many chronic health conditions by the age of 50 than the general population. Hearing loss, infertility, second cancers, heart disease, heart rhythm disorders, high blood pressure, diabetes, obesity, lung function problems, and spinal disorders are just some of the lifelong conditions they are more likely to face as childhood cancer survivors. Studies have shown that childhood cancer survivors typically have more than four serious chronic health conditions by the age of 50 than the average 50 yr old.

To provide a firsthand look into the life of a mother dealing with a child with cancer, I interviewed a friend of mine, Tracy Whitten, who’s 3-year-old son is currently battling neuroblastoma (he is pictured in this article riding his little tricycle through the halls of the children’s hospital where he has spent around 169 days in the past year, plus weekly clinic visits, with an expected 42 more days to come, at least).

Neuroblastoma is the most common type of cancer in infants. With this disease, a solid tumor is formed by special nerve cells called neuroblasts. Typical treatments for neuroblastoma include radiation, surgery, and chemotherapy. Tracy’s son, within just one year, has already undergone all three of these. His little body has been put through five cycles of chemo, surgery to remove some of the tumor, two cycles of high dose chemo followed by two stem cell transplants, 21 days of radiation, and he is now on antibody/immunotherapy treatment – the last on the protocol. Next is two years of oral medications to help prevent a relapse.

Tracy informed me “what you don’t read in the facts and statistics for childhood cancer is the harsh, behind the scenes, reality that families don’t always want to share. The fevers, nose bleeds that you can’t stop, throwing up nonstop, mucositis (sores that form from his mouth to his bottom) to where he has to be fed through an IV because he can’t even tolerate food. The bleeding anywhere and everywhere. The damage to his kidneys, heart, and liver. The hearing loss. These are just the effects that we know our son is having right now while still in treatments. He will suffer from this for the rest of his life and will have to have scans until, at least, the age of 30.”

Since 1980, less than 10 new drugs have been created for use in children with cancer and only three of them have been approved for use in children, four have been approved for use in adults and children. This means that children are receiving some of the same treatments as adults and their little bodies can not handle it as easily, if at all. Many children die from the treatments, not the cancer itself.

Despite all of these facts, childhood cancer research receives just 4% of the annual budget from the tax-payer funded National Cancer Institute (NCI) (update: within the past week the National Institutes of Health (NIH) approved an increase to 7% funding – this small increase still has to finish processing and receive bill approval from the Presidents desk).

If you are a parent, you should be extremely upset about this, even 7% is not enough.

Children are dying every single day waiting for new treatments that lack funding. Although advances in diagnoses and treatment over the past 40 years (when a diagnosis of childhood cancer was almost always fatal) have increased the chances of survival to 75% for children, it has been stagnant for the last 10 years due to major funding gaps. Childhood cancer is not just one disease, it is made up of 12 major types and over 100 subtypes, some of which have no treatments and therefore are an immediate death sentence.

When I asked Tracy about how she feels regarding the inadequate funding for childhood research, she adamantly told me that “four percent of funding is NOT FAIR. I just watched three mothers in one hospital over the past three weeks watch their sons fight a good fight only to lose their battle. Three children in three weeks from one children’s hospital, all with different types of cancer. We need MORE funding for MORE research to SAVE these kids!!!”

Tracy went on to add that “cancer does not discriminate. We personally have never known a child with cancer until our son, Wayland, was diagnosed. One thing that I would really like for people to know and understand would be the emotional and physical exhaustion that cancer takes on these kids and their families. From the very beginning when questioning if your child is going to survive the cancer through the agonizing questioning of whether or not the treatments are going to kill him. The constant worry and questioning is just unexplainable. However, the doctors and staff at the Children’s Center for Cancer and Blood Disorders in Columbia are an amazing and supportive group of people who have been patiently helping us through this.”

It does not matter what color your skin is, what your age is, what your gender is, how much money your family has, what religion you are, or even how much you are loved. Cancer can and does strike any child at any time. Our children are the most innocent humans on this earth and yet they are dying daily from a disease that doesn’t receive adequate funding for research.

One reason it is believed that childhood cancer doesn’t receive the funding it deserves is that pharmaceutical companies won’t receive as much money from the medications. In addition, the government uses the “rarity” of childhood cancer to avoid funding it. In 2010, breast cancer research received approximately $631 million in research funding from the NCI, but just one of the numerous childhood cancers (non-Hodgkin’s lymphoma) received only $122 million. In the same time period there were about four drugs approved for children whereas there were about 200 approved for adults.

Ultimately, what it comes down to is kids aren’t old enough to vote, so politicians don’t have to answer to kids. This is where us, as parents, come in. WE MUST BE THEIR VOICE!!!

These innocent children are in the fight of their lives and even if they manage to survive, it destroys their quality of life. While most kids are riding their tricycles in the park, these little superheroes are riding theirs through the hallways of the hospital. They know the names of their chemo, nurses, and doctors instead of their classmates. They have more strength in their pinky fingers than a grown man has in his whole body. To see a child fighting cancer will change your life forever and they aren’t hard to find.

What can you do?

Research, volunteer, talk to your state representatives, donate, VOTE for those who want to take a stand against the NCI, and please help with any go-fund-me’s that you see come around as this is usually the only way parents can raise the money they need to pay for the average cost of the hospital stays for their children, which is estimated on the lowest end at $40,000 per stay; however this depends on the type of cancer and treatments required and it doesn’t include the loss of a parents job to stay with their child, the costs of hotels to be able to stay in the same town as your child, the cost of food while you are away from home for months at a time, etc.

You CAN make a difference! It’s time to get angry and it’s time to fight!!!

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Brooke Moore
Brooke is many things, but normal is not one of them! She’s a native of SC who was raised in Bamberg and has been living in Columbia since 2017. She’s a Mom of 3 amazing kids. Brooke and her husband Chris married in 2014. Together, they’ve become avid advocates for autism awareness in support of their son Will. Brooke holds a Masters in Information Technology and works as an IT Security Risk Analyst. In addition to her love for writing, Brooke also loves running, bow hunting, and tattoos. She’s a Christian who’s definitely not without flaw, a survivor, and an advocate for survivors of domestic violence and sexual assault. In her spare time she writes for her blog at https://brookemoore.medium.com and feeds her social media obsession on Facebook.

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