By Courtney Elisech
September is recognized as Childhood Cancer Awareness Month both nationally and globally. While there seems to be a day or a month to recognize everything, this is an important one to learn about, acknowledge, and help if you can.
Introduction
Did you know? Over 300,000 children are diagnosed with cancer every year worldwide. In the U.S., one in 258 children is diagnosed with cancer before they reach their twentieth birthday, and 20% will not survive.
Think about it like this, every year, 15,000 children in the U.S. will be diagnosed, and one out of five will not survive. 95% of those that do survive the aggressive treatments will most likely face a lifetime of health problems from the effects of the treatment that saved them.
An important thing to note is that there is not just one type of childhood cancer. Many kinds can be in different places throughout the body. The most common pediatric cancer, and one known to most people, is cancer in your blood called leukemia.
Childhood cancer can also take the form of a tumor in the nervous system, like a brain or spinal cord tumor. It can be found in muscles, bones, and skin and is known as a solid tumor. Lymphoma is when cancer is found in organs and tissue.
Current treatments for childhood cancer can be chemotherapy, radiation, surgery, or immunotherapy. Researchers are constantly looking for more treatment options and trying to understand the disease.
According to St. Jude Children’s Research Hospital, organizations around the world honor children and survivors of pediatric cancer for the entire month of September. They do this to raise awareness and continue researching and treating the disease.
In 2012 President Obama officially proclaimed September as National Childhood Cancer Awareness Month in the United States. The official ribbon for Childhood Cancer Awareness is gold.
Chances are you know someone affected by childhood cancer, a survivor or their mother, father, sister, brother, friend, lover, etc. Not many people talk about childhood cancer because it makes people uncomfortable, and it often hurts to talk about it.
Through the eyes of a mother to a childhood cancer survivor
“Childhood cancer affects everyone involved,” said Melissa Bargas, mother of a childhood cancer survivor. My mother. “It’s hard on the families. I watched a lot of people fight and break up at the hospital. Like a doctor once said to me, ‘you will either come together or break apart like a block of cheese.’ And sometimes I felt like a bag of shred.”
When I was a little girl, I was diagnosed with acute lymphoblastic leukemia, and so began our journey into the world of cancer. At the time, most of my treatment was experimental. I sat down with my mom to talk about some of her experiences as a parent.
For many families, it is hard to find a balance. Which child needs attention when? What do you tell the other children about what is happening? How do you manage to stay together when everything is falling apart? What about bills and food?
Our family was separated for so long while I was treated at the University of Michigan hospital in Ann Arbor. My older sister stayed with our grandparents so my mom could be in the hospital full time with me. I spent two Christmases in the hospital, one where I couldn’t leave. Special permission had to be granted to go out for a few hours and return on holidays.
“Leaving one kid at home and watching another in unbearable pain made my heart hurt,” Bargas said.
Tough decisions must be made in small amounts of time.
“I will never forget that first day. The day we found out,” said Bargas. “Coming off the elevator, everyone was waiting for me. You were in the room smiling and yelled ‘mommy’ so happily. I remember asking you what was wrong. And then it was a blur.”
Because childhood cancer is rarely impacted by environmental factors and often doesn’t have specific symptoms, treatment is started immediately and aggressively. Childhood cancer signs can often mimic common illnesses and bruises.
One positive is that many childhood cancers respond better to different treatments. Most likely, the reason for this is that both cancers and children receive more intense and aggressive forms of treatment.
“They rushed me from the room to sign papers,” Bargas continued. “There were questions and pamphlets and talking about the next steps. They used the words fatal and death constantly. Then they started tests and transfusions. We had to hold you down for a spinal tap the next day. And then we waited and waited.”
Nearly every medication insert warned that they could cause death. It is a difficult decision to sign the paper to start pumping the medications in, but there is nothing else you can do. You never know what is best. You have to trust the doctors and the science.
“For me, the worst thing was not being able to do anything about it,” Bargas shared her feelings of hopelessness at the situation. “I couldn’t take it away or make it better.”
A child’s body responds better to treatment in some cases than an adult’s, but it is still growing, and the side effects of the treatments can be devastating and long-lasting.
“Being alone and isolated was really hard,” Bargas explained. “Hearing the kids cry all the time and seeing the devastation. Everyone was so far away, and it was before people had cell phones with them all the time.”
Childhood cancer can make you recognize that even when you feel like your chances are low, there is still hope.
“You had a 70% chance of making it,” Bargas began. “And I thought nothing could be worse. A mom sat down next to me, and her daughter had only a 30% chance. It made me quiet for a moment and be thankful for the odds we had.”
One story that is comical in a morbid sense is when I started losing my hair from the chemotherapy. As soon as it started falling out, my mom gave me the scissors and let me have at it. It was a little choppy for a few days.
Educating yourself as a parent in this situation is crucial. You must learn and read about the medications, the side effects, blood cell counts, what is dangerous to do physically, and keep track of meals and medication dosages.
Meals were a unique experience as steroids and chemo can alter taste buds, cravings, sensitivities, and hunger. The doctors will tell a parent to let the child eat whatever they will actually eat. My diet was pretty much potato chips, fried chicken skin, bacon, sharp cheddar cheese on the block, dill pickles, and grilled cheeses from McDonald’s.
The first time she left the hospital, Bargas said her parking ticket was around $1,000. The car hadn’t moved in about 70 days. The financial burden of being present with your child when sick is not often acknowledged. Whether it is missing work, paying bills late, or parking the car.
Bargas reminisced over the other children at the hospital that impacted her and how they gave her hope. Seeing the reality and total horror of a baby on the brink of death but watching them return gives you hope.
There is also devastation that remains, and children she can’t forget. Stories that hurt to think about. Children who were one step out the door didn’t make it, like baby David and Chelsea, who fought so hard and lost their battle.
My mom kept me sheltered and close to her when I was growing up, always worried something would happen. She monitored everything the doctors did to ensure she knew what was being done, worried they would mess up.
Our family was introduced to Special Days Camps during my treatment, a summer camp for children who have or have had cancer and their siblings. Theresa worked in the hospital and helped to teach patients and their families about their broviacs and how to care for and manage them. While doing this, she shared information about the camp. A broviac is a particular intravenous line inserted under the skin on the chest; it is meant for long-term I.V. therapy.
Since I was four years old, I have attended Special Days. I am now on staff at the summer camp and have been for 14 years. Special Days provide cancer survivors with a place to go and be accepted no matter what. It gives siblings a chance for a week that is all about them and families a break while knowing their children are safe and happy.
Through the eyes of a pediatric oncology nurse
Kaitlyn Dempsey, 30, has volunteered with Special Days Camps for the last 11 years, which was her inspiration to work as a pediatric oncology research nurse.
“After volunteering with Special Days Camps my freshmen year, I knew I wanted to work as a peds oncology nurse,” Dempsey said. “Meeting the kids and siblings whose lives had been affected by childhood cancer set it in my heart.”
During her freshman year, she was rooming with someone that would become a best friend and introduce her to the camp that had such an impact. That roommate was the daughter of one of the camp’s first campers. Her grandparents helped to start Special Days with her mom’s oncologist.
Working as a pediatric oncology nurse Dempsey has experienced every emotion, from heartwarming to gut-wrenching.
“You have the highest highs and lowest lows,” Dempsey shared. “There are so many sweet moments. The time families can spend together is so precious. The work we do is grounded in the reality of the situation.”
Sometimes to care means to listen, which makes all the difference. The medical team’s extra effort to provide care goes above and beyond. Little things can be done for patients and their families to make them feel seen and heard.
While you want to tell the patient and their family that everything will be okay, that’s not always the reality. Some of the hardest things in these situations are honesty and hope. The reality of the situation must be said without giving false hope but still keeping hope alive.
“When everyone isn’t on the same page of what is happening or will happen shortly,” Dempsey said when asked what the hardest part of working in pediatric oncology is. “I think hope is such a delicate thing to toy with. You always want to keep some hope, but what you are hoping for may need to change. No one wants to speak of the worse, but how can you be prepared for it if we don’t broach the subject? How can a parent begin to process when they don’t understand what is happening?”
Childhood cancer is not often discussed or thought about unless it is actively affecting you. How often have you ever thought of it before reading this article? Not often.
“While it is one of the top reasons for death in the pediatric population, it still affects a smaller number of the familiar in the U.S. when compared to adults with cancer,” Dempsey said.” You may know of a classmate or a neighbor who has it, but until you see the day and day out of what cancer treatment requires, most people wouldn’t want to give it much thought. It’s too sad of a topic when your life is unaffected.”
Working in pediatric oncology research has opened Dempsey’s eyes to the lack of funding for drugs and treatment plans to get more kids into remission with fewer side effects. The red tape and lack of money directly impact the number of kids’ lives that can be saved.
“More attention needs to be brought to the prevention and treatment of pediatric oncology,” Dempsey said. “There is still so much to discover.”
Through the eyes of a childhood cancer survivor
Zoe Bergen, 18, was diagnosed before age two with a tumor on her adrenal gland. The tumor was removed, which means the adrenal gland was removed, and she lives with only one now. After treatment that included chemotherapy, Zoe is now in remission from her cancer.
Bergen’s mom was like every other mom of a child with cancer and sheltered her daughter growing up. Her mother was appropriately scared of losing her daughter. And like every childhood cancer survivor, this caused a lack of socialization in her life.
Special Days Camps have been a part of Bergen’s life since she was five. Now, she is on staff, giving back to kids just like her. In some ways, cancer gave her more than it took by connections and support systems. She has met and made close bonds with friends at camp.
Memories at camp are unforgettable, but some are hard to remember.
“I watched my friend ball her eyes out because originally she was told she did not have to continue her treatment at camp,” Bergen remembered. “Then she had to get another round of chemo. It was the most heart-wrenching thing to see a nine-year-old girl cry because she had to get more shots.”
Her bond with her friends who also survived childhood cancer is unbreakable.
“I will never forget breaking down in the middle of watching a basketball game at my school because I found out Josiah had relapsed,” Bergen said of a fellow Special Days camper and friend. “Some jerk asked me why I was crying, and I said my friend relapsed. He didn’t understand and said there’s no such thing that you just get cancer again. Kids can be harsh, and they aren’t willing to listen.”
Many survivors of childhood cancer struggle with memories, depending on their diagnosis, age, and treatment extent. Zoe agrees that because she was so young, she mostly remembers follow-up appointments, not the actual treatment.
Though it is hard to remember, the treatment has had lasting effects. Endless struggles at doctor visits to review the medical history that never ends, ensuring that old medical problems listed are no longer a factor, and getting them to take you seriously when something new is wrong. Even comments on body shape and how scars will look are hard to process.
It can be a double edge sword in the medical world as a survivor; they want to keep bringing up your past illness but won’t acknowledge or link any new problems to cancer and the treatment.
Often a survivor will over analyze an illness or link it to their cancer and treatment because there is no other explanation. Memory problems, remembering names, losing your thought process mid-sentence, pain at the incision or procedure sites that have been healed for years, and so much more.
Some of the long-term effects present just as childhood cancer might, something you might brush off the first few times before realizing what it is and seeking to help.
Conclusion
All I have ever known is facts and my experience with childhood cancer. I have found friends and lost friends through the years. Cancer has always been a part of me. But it is not a part of everyone’s life, so it is important to spread awareness of the disease and raise funds for research and treatments.
Donate to help those affected by childhood cancer through the following organizations:
- C.S. Mott Children’s Hospital #BlockOutCancer is the fundraiser for Childhood Cancer Awareness Month to benefit research.
- American Cancer Society donations will benefit research for cancer patients of all ages.
- Make-A-Wish is a foundation that helps grant a wish to a childhood cancer patient.
- Special Days Camps provide a safe and healthy environment for children affected by cancer just to be a kid at summer camp.
- American Childhood Cancer Organization supports families affected by pediatric cancer.
