Learning about Childhood Cancer
- Kennedy Cloutier is a 13-month-old cancer warrior. He was diagnosed with an atypical teratoid rhabdoid tumor at 9 months after displaying symptoms like vomiting and torticollis (a condition where a baby’s neck muscles cause their head to twist and tilt to one side) on one side of his neck that switched to the other side.
- An atypical teratoid rhabdoid tumor, or ATRT, is a primary central nervous system (CNS) tumor meaning it begins in the brain or spinal cord. ATRTs are all classified as Grade IV tumors which means they are malignant (cancerous) and fast-growing. Symptoms may include morning headaches, vomiting, changes in activity levels, loss of balance and/or an increase in head size (in infants).
- 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 child and his or her family to go through. In a previous interview with SurvivorNet, one caregiver/mother of a cancer survivor found therapy to be a great way to process everything happening to her family.
Kennedy’s cancer journey began after his mother, Christina Cloutier, started noticing his odd symptoms.
Read More"Due to the removal, he has left side paralysis of his face, his vocal cords and his eye function but he is starting to blink a little bit,” Christina said. “After the craniotomy, he couldn't close his eye at all.
“So, when they went in to surgically remove the tumor, they didn't damage his 7th cranial nerve, they stretched it to get the tumor out. As a result, it caused facial paralysis… but over time, the nerves should start reconnecting each other, growing together and realizing what they need to do so he might gain a bit of muscle function back."
After that, Kennedy began chemotherapy and radiation treatments.
“He is my little lion,” Christina said. “I think what Kennedy shows us is that fighting cancer takes a lot of courage and bravery.”
Kennedy has since finished those treatments and returned home, but he still receives routine MRI’s and scans to monitor his residual tumor. Now, his family is looking forward to celebrating his second birthday in October.
“Kennedy has taught us not to sweat the small stuff, you know, he's been through a lot he just never acts like it,” Christina said. “He was born into this world to be a brave, courageous lion, and that's exactly what he is.”
What Is An Atypical Teratoid Rhabdoid Tumor (ATRT)?
An atypical teratoid rhabdoid tumor, or ATRT, is a primary central nervous system (CNS) tumor meaning it begins in the brain or spinal cord. ATRTs are all classified as Grade IV tumors which means they are malignant (cancerous) and fast-growing, and they often spread to other areas of the CNS through cerebrospinal fluid (CSF).
ATRTs are rare overall, but they can develop in both children and adults. These cancerous tumors are more common in children with only 50 reported cases in adults and slightly more often in males than females. The National Cancer Institute estimates that there are 596 people living with this tumor in the United States.
Symptoms of an ATRT depend on the person’s age and the tumor’s location, and they generally get worse quickly since this is a fast-growing cancer. Possible symptoms can include:
- Morning headaches
- Vomiting
- Changes in activity levels
- Loss of balance
- Increase in head size (in infants)
If you notice that you or your child is developing any of these symptoms or any health changes at all, you should contact your doctor swiftly. Having any of these symptoms doesn’t necessarily mean there is an ATRT present, but you never know when speaking up about your health can lead to a crucial diagnosis.
Treatment for ATRTs varies from case to case, but a first step is surgery if possible. After that, patients typically undergo further treatment such as radiation, chemotherapy or clinical trials. Consider getting a second opinion if you or your child is diagnosed with this rare cancer.
RELATED: Cancer Research Legend Urges Patients to Get Multiple Opinions
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.
The Impact of a Childhood Cancer Diagnosis on the Whole Family Jayne Wexler Shares Her Story
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.
"I Try To Stay Strong, But Sometimes You Need To Cry": Playing The Role of Cancer Caregiver and Mom
"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."
Wexler also 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.
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