The Importance of Advocating for Your Child
- Natalie Ridler, 32, knew something was wrong with her 2-year-old son Morgan when he started rapidly gaining weight, growing excessive body hair and developing behavioral issues. But doctors kept telling her she was overfeeding her child.
- Come to find out, Morgan had a very rare cancer of the adrenal glands called adrenocortical carcinoma. He is in remission after surgery and chemotherapy, but his parents live with constant anxiety that his cancer will return.
- There’s still much needed improved to be made in the world of childhood cancer care. But one of our experts says she’s hopeful because there are targeted treatments and immunotherapies previously studied in adults that have been moved into clinical trials for children.
- Here at SurvivorNet, we’re always encouraging people to advocate for themselves when it comes to cancer and, more generally, health care. But when it comes to a child, the parent must become the advocate and make sure any possible signs of cancer are fully and expeditiously addressed.
Natalie Ridler, 32, knew something was wrong with her 2-year-old son Morgan when he started rapidly gaining weight in April. He also developed excessive body hair and behavioral issues.Read More
“We thought we were going to lose our son because it had taken so long to get him diagnosed,” Ridler said.
According to the National Cancer Institute, adrenocortical carcinoma (ACC) is a very rare cancer of the adrenal glands – two small triangular-shaped glands that sit on top of each kidney. The cancer can cause pain in the abdomen, high blood pressure, acne, overgrowth of hair and voice deepening, among other things. Genetic testing is recommended for all close relatives of people with ACC.
Ridler was understandably upset it took so long for her son to be properly diagnosed.
“I was angry that I hadn’t pushed harder sooner,” Ridler said. “I was concerned about perhaps, an endocrine disorder or hormone disorder, but I never thought it was going to be cancer.”
For treatment, Morgan first underwent surgery which revealed his tumor has spread to his lungs. Then, he had chemotherapy treatments.
“I don’t think we will ever recover from seeing him being treated for cancer,” Ridler said. “It was heartbreaking to have to see him so poorly.
“He was frequently sick and housebound due to being immunocompromised from the chemotherapy. Seeing him so unwell, having to force him to do things that he didn’t want to do, the unexpected hospital trips.”
Morgan is, thankfully, in remission today. But the possibility of his cancer returning or something else developing is a constant source of stress for his family.
“It was a relief when he went into remission, but not nearly the exuberant feeling of joy that I expected,” Ridler said. “There is constant anxiety that something will return, especially since Morgan was found to have a genetic mutation which makes him more susceptible to cancer called Li-Fraumeni syndrome.”
According to the American Society of Clinical Oncology, Li-Fraumeni Syndrome (LFS) is a rare hereditary cancer predisposition syndrome. The condition is most commonly caused by a mutation (alteration) in a gene called TP53, and there is increasing research showing that an intensive screening plan improves survival of individuals with a TP53 mutation who do not have any signs or symptoms of cancer. Morgan currently has regular scans to spot any issues as early as possible.
“After being thrown into the world of cancer, it feels like it will always be a passenger on our life journey now,” Ridler said.
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.
Advocating for Your Child
Here at SurvivorNet, we always encourage people to advocate for themselves when it comes to cancer and, more generally, health care. When it comes to a child, the parent must become the advocate.
And even if you’re called ‘pushy’ or people dismiss the concerns you have for your child, it’s important to remember that you never know when speaking up about a seemingly unproblematic issue can lead to a very important diagnosis – cancer or otherwise.
“Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn’t work, what the next plan is,” Dr. Zuri Murell, director of the Cedars-Sinai Colorectal Cancer Center, told SurvivorNet in a previous interview. “And I think that that’s totally fair. And me as a health professional – that’s what I do for all of my patients.”
In a previous interview with SurvivorNet, April Knowles also talked about self advocacy and explained how she became a breast cancer advocate after her doctor dismissed the lump in her breast as a side effect of her menstrual period. Unfortunately, that dismissal was a mistake. Knowles was diagnosed with metastatic breast cancer at age 39. She said the experience taught her the importance of listening to her body and speaking up when something doesn’t feel right.
“I wanted my doctor to like me,” she said. “I think women, especially young women, are really used to being dismissed by their doctors.”
Figuring out whether or not you have – or your child has – cancer or a tumor based on possible symptoms is critical because early detection may help with treatment and outcomes. Seeking multiple opinions is one way make sure you are or your child is getting the proper care and attention. You should also try to remember that not all doctors are in agreement. Recommendations for further testing or treatment options can vary, and sometimes it’s essential to talk with multiple medical professionals.