Handling a Childhood Cancer Diagnosis
- Fifteen-month-old Mariah is currently battling stage four neuroblastoma. Her diagnosis came after her parents brought her to the emergency room after her baby formula was recalled.
- Neuroblastoma is a type of cancer that starts in certain very early forms of nerve cells, most often found in an embryo or fetus, with varying symptoms depending on where the tumor is, how large it is, how far it has spread and if the tumor makes hormones. It is by far the most common cancer in infants (younger than 1 year old).
- 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.
Jared and Mary Ritsema are the proud parents of fifteen-month-old Mariah Pearl. But their world was turned upside down when Mariah grew lethargic and sick around six months after she was born and visits to the pediatrician provided no answers.Read More
Mariah’s course of treatments will last for about two years. So far, she’s had chemotherapy and bone marrow transplants.
“Six different pumps with medications going off every hour, or every half-hour there’s beeping,” Jared said of his baby’s cancer treatment.
Due to a birth complication, Mariah also needed brain surgery to address the fluid on her brain.
“They cauterized the main artery off in the brain,” Jared said of that operation. “She’s the second kid to ever have this surgery done at Helen DeVos (Children’s Hospital).”
Mary and Jared have struggled with the emotional and financial burdens of watching their precious daughter battle cancer, but they have also been amazed by how happy Mariah seems to be regardless of her harrowing health battles.
“We’re all here together and we’re in a room and it just makes her happy for all of us to be together and spending time together,” Mary said.
If you’d like to financially help the Ritsema family, check out their GoFundMe page here.
Neuroblastoma is a type of cancer that starts in certain very early forms of nerve cells, most often found in an embryo or fetus. In fact, neuroblastoma is “by far the most common cancer in infants (younger than 1 year old)” with about 700 to 800 new cases each year in the United States.
Neuroblastomas can be found anywhere along the sympathetic nervous system – a part of the autonomic nervous system (the system that controls bodily functions like heart rate, breathing, blood pressure, digestion and others.) The sympathetic nervous system includes:
- Nerve fibers that run along either side the spinal cord.
- Clusters of nerve cells called ganglia (plural of ganglion) at certain points along the path of the nerve fibers.
- Nerve-like cells found in the medulla (center) of the adrenal glands. The adrenals are small glands that sit on top of each kidney. These glands make hormones (such as adrenaline [epinephrine]) that help control heart rate, blood pressure, blood sugar, and how the body reacts to stress.
Symptoms of this type of cancer vary since neuroblastoma can start in different places in the body, and neuroblastoma cells can also sometimes release chemicals called hormones, which can affect other parts of the body. According to the American Cancer Society, some of the more common symptoms can include:
- A lump or swelling in the child’s belly that doesn’t seem to hurt
- Swelling in the legs or in the upper chest, neck, and face
- Problems with breathing or swallowing
- Weight loss
- Not eating or complaining about feeling full
- Problems with bowel movements or urinating
- Pain in bones
- Lumps or bumps under the skin, which may appear blue
- Drooping eyelid and small pupil (the black area in the center of the eye) in one eye
- Problems being able to feel or move parts of the body
- Eyes that appear to bulge and/or bruising around the eyes
Signs and symptoms might be different depending on where the tumor is, how large it is, how far it has spread and if the tumor makes hormones. It’s also important to note that many of these symptoms can be caused by things other than this cancer. Regardless, you should always investigate any changes to your child’s health.
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.