Learning about Childhood Cancer
- After losing her 10-year-old daughter Sophie to cancer, Charlotte Fairall has been on a mission to educate about childhood cancer.
- Sophie was diagnosed with rhabdomyosarcoma in September 2020 after experiencing consistent stomach pains, nausea and abnormal bleeding. She passed in September 2021.
- Treatment advances in recent decades have lead to 85 percent of children with cancer now surviving five years or more, according to the American Cancer Society. This is up from 58 percent from the mid-1970s, but there’s still a lot of work to be done.
“You hear that childhood cancer is rare, so as a parent you think if it’s rare it’s never going to happen to us,” Charlotte Fairall said. “You think of all the other signs and symptoms, and think, ‘Oh, it will be other things.'”Read More
As she underwent treatment, Sophie made a bucket list of things she wanted to change in the world of childhood cancer. Some of her concerns included informing others of cancer symptoms, bringing more toys to hospitals and providing better foods for the people visiting their loved ones in the hospital.
“She wanted parents to be fed and kept saying to me, ‘Why aren’t you being fed mum, you’re here and don’t have a choice to be here. You’re here because I’m ill, why are they not feeding you?’ Charlotte explained. “She just couldn’t understand that.”
In Sophie’s honor, Charlotte is bring her concerns to the Parliament floor. She wants children with cancer to receive their diagnoses quicker and more people to be aware of the signs and symptoms of childhood cancer.
“A lot of children are diagnosed stage three and four,” she said. “They need to be diagnosed quicker, we know that the outcome if they are diagnosed earlier is better.
“I don’t want any parent to be in our position to have to sit and watch their child die, knowing if research had happened and investment been put in for cancer.”
Sophie’s Cancer Battle
Sophie was diagnosed with rhabdomyosarcoma in September 2020 after experiencing consistent stomach pains, nausea and abnormal bleeding.
“She was complaining of stomach pains, feeling sick and struggling to eat in the morning when she woke up,” Charlotte said of her daughters symptoms. “That was on and off from July and more consistent in August. She started bleeding and we had seen the [general practitioner] before that, but was told it was other things.”
Unfortunately, doctors put her symptoms down to her period at first.
“She had some of the real red flags,” Charlotte said. “Abnormal bleeding is definitely a red flag, stomach pain and consistent pains in the stomach was another one, and that feeling of nausea.
“We know all children feel sick but it’s the persistence of it. Those were all flags but I didn’t know the signs and symptoms.”
Charlotte took her daughter to the hospital feeling unsatisfied with her initial visit, and that’s when they started to realize something was very wrong.
“They asked me in the hospital, “How long has she had this lump for?” and I said “What lump?” Charlotte explained. “They found a 12cm tumor in her abdomen.”
For treatment, Sophie underwent several surgeries, chemotherapy and radiotherapy, but she eventually relapsed. She passed away in September 2021, but her mother is honoring her memory by raising awareness for childhood cancer.
What Is Childhood Rhabdomyosarcoma?
Childhood rhabdomyosarcoma is a disease in which malignant (cancerous) cells form in muscle tissue. Symptoms of the disease can vary, but it’s always important to bring your child to the doctor if any changes to their health occur. Possible signs of childhood rhabdomyosarcoma can include:
- A lump or swelling that keeps getting bigger or does not go away. It may be painful.
- Crossed-eyes or bulging of the eye.
- Trouble urinating or having bowel movements.
- Blood in the urine.
- Bleeding in the nose, throat, vagina, or rectum.
Understanding Childhood Cancer
Treatment advances in recent decades have lead to 85 percent of children with cancer now surviving five years or more, according to the American Cancer Society. This is up from 58 percent from the mid-1970s.
But according to the National Pediatric Cancer Foundation, more than 95 percent of childhood cancer survivors have significant health-related issues because of the current treatment options, and only 4 percent of the billions of dollars spent each year on cancer research and treatments are directed towards treating childhood cancer in the United States. Since 1980, fewer than 10 drugs have been developed for use in children with cancer while hundreds of drugs have been created exclusively for adults.
Dr. Elizabeth Raetz, director of pediatric hematology and oncology at NYU Langone’s Perlmutter Cancer Center, reminded us in a previous interview that there is still reason for hope.
“There are also targeted treatments and different immunotherapies that have been studied in adults and have now moved into clinical trials for children and there has been a great deal of excitement in the community about that,” Dr. Raetz told SurvivorNet.
Caring for a Child with Cancer
Still, navigating a child’s cancer diagnosis can be incredibly tricky – something Jayne Wexler knows all too well. She had to fill the roles of parent and cancer caregiver when her son, Justice, was diagnosed with acute lymphoblastic leukemia. Thankfully, he has since recovered.
In a previous interview with SurvivorNet, Wexler explained how she managed to be a mother and a caregiver all at once.
“Being a caregiver is a huge job,” Wexler said. “Fortunately, my husband and family were very supportive … it’s really hard to see your child go through this. If it could be me, I would take it in a second. You just go on auto-pilot and you just do what you have to do.”
But that doesn’t mean it was always easy. Wexler admitted that as a parent caring for a child with the disease, you don’t have a lot of time to sit down and deal with your own emotions.
“You don’t have that much time for yourself,” Wexler said. “I try to stay strong, but then sometimes you just want to go and cry, and you need to cry… it’s good to cry.”
The survival rate for children with cancer has improved over the past few decades, but pediatric cancer is still an incredibly hard thing for a family to go through. In her own caregiving experience, Wexler found therapy to be a great way to process everything happening to her family. Regardless of whether it’s therapy or participating in your favorite activities or something entirely different, it’s important to find ways to also take care of yourself as you’re taking care of your child.