Write Team: Children living with cancer: Let’s be their golden sunshine

Megan Bugg has battled childhood cancer, specifically Alveolar Rhabdomyosarcoma (ARMS), for one-third of her life. First diagnosed when she was 13, she has gone through more than 130 weeks of chemotherapy, 200 radiation treatments, six relapses and, most recently, a 12-hour surgery.

I asked Megan to share with us what life is like for a child living with cancer.

“Fighting childhood cancer is so hard for a kid. Not only are kids like me dealing with a terrible disease, but we also have so much more going on in our lives. We have to miss school because of low blood counts caused by the chemotherapy treatments. We lose our hair, which is especially tough for a kid in middle school. We start to lose our friends because we can’t hang out with them and we look different. We miss out on school activities like sports and musicals because we are always in the hospital or have to stay quarantined due to low blood counts.

“These chemotherapy treatments are awful because the side effects are so hard to deal with, which include terrible nausea, hair loss, bone pain, digestive issues, neuropathy, headaches, heart damage, lung damage, and I could go on and on. I’ve had them all and I wouldn’t wish this on anyone. That’s why we have to do better.

“This is also really hard on everyone in the family as my parents have had to juggle work with my care, and it’s really been hard on my sister who worries about me from college. Childhood cancer impacts the entire family.”

Megan has become a fundraising warrior. “I would like to see childhood cancer become a priority for our federal government and the pharmaceutical companies. Most of the treatments childhood cancer patients receive were developed in the 1970s. There are on average 11 new adult cancer drugs approved every year by the FDA. For all childhood cancers, there have been only four drugs EVER approved in the first instance for use in the cancer treatment. For my type of cancer there has NEVER been a drug approved for use in the first instance of treatment. Currently, the federal government only allocated 4% of every dollar spent on cancer research to researching less toxic treatments for childhood cancers.”

“As a result, childhood cancer patients like me are out there raising funds for private labs and doctors who have innovative treatment ideas but lack the funds to get their drugs to a full clinical trial,” Megan said. “Thanks to the generosity of so many people and organizations, I have been able to raise $560,000 for childhood cancer research, but should childhood cancer patients in treatment like me really have to resort to raising money to fund the very treatments that could save our lives? It just doesn’t seem right.

“The money is important, but what’s even more important is raising awareness for childhood cancer, because when people know and understand the reality of this disease, hopefully the money will follow. People can wear gold during the month of September, which is Childhood Cancer Awareness Month. People can write letters to the congressmen telling them to support childhood cancer research.

“I am currently working to raise $233,000 to support a research project at the Children’s Cancer Therapy Development Institute. People can donate to my fundraiser at https://cc-tdi.kindful.com/?campaign=1119113. I believe the change is going to come, but unfortunately, kids with cancer don’t have the luxury of time, so I am working to make sure that change comes quickly.”

Megan has spent the past month recovering from surgery. Setbacks have left her sad, scared and discouraged. And she is not the only one. We all know children and families who have had their lives turned upside down by a cancer diagnosis.

Please, in the coming days, wear gold. Donate whatever amount you can. Contact elected officials.

Children are the future. No child should be scared. We must act now and share our strength, to fill them with hope and turn their fears into the promise of a better day.

Let’s be their golden sunshine.

• Karen Roth is a semiretired librarian/educator living in Ottawa. She can be reached at dbarichello@shawmedia.com.