A Patient's Perspective: How a Cancer Diagnosis Impacts Children and Their Families
Nearly 16,000 children in the United States and 300,000 worldwide are diagnosed with cancer each year, according to estimates from the American Childhood Cancer Organization.
Cancer is a difficult diagnosis at any age. But imagine coping with it as a child.
To get a better understanding, we talked to one of our Hasbro Children’s Hospital patients and a social worker from her care team. Ne'anci “Ney-Ney” Brewer is a freshman at Rogers High School. She is about to turn 15, she lives in Newport and she enjoys dancing.
A teenager receives a cancer diagnosis
Just after she celebrated her 13th birthday, Ney-Ney was diagnosed with leukemia, a blood cancer that starts in the bone marrow. She had a type of leukemia called T-cell acute lymphoblastic leukemia (ALL), an aggressive form of the disease.
On receiving her diagnosis, an amazingly brave Ney-Ney told us, “I only had one tear when I found out. I wasn't too scared. My friend also had cancer, so I knew she would help me through this.” At that time Ney-Ney was watching a television show, Alexa and Katie. “In the show, Alexa had leukemia and her friend was always there for her. It was comforting,” she said.
Abbey said, “For the child, they are often most impacted by how their treatment alters their day-to-day lives. The patients I work with are immunocompromised during their treatment, which means they are at high risk of infection, so can't go to school or engage in a lot of their usual activities.”
Also, if children are experiencing a lot of side effects from their treatment, or feeling sick, this can limit what they can do even more. As Abbey said, “Kids and teenagers can often feel angry about all of the things happening outside of their control, and that's totally valid -- having cancer stinks!”
For the parents, it’s completely different. Abbey explained, “So many parents tell me that it feels like their world is being turned upside down when their child initially gets diagnosed with cancer. Everything suddenly revolves around doctors’ appointments and chemotherapy.” Of course, over time, families adjust to the new routines and begin to feel at home in our clinic. That adjustment can be really tough, though.
Cancer treatment for children
When asked about what it was like going through treatment, Ney-Ney said, “It's been a roller coaster. Some days you feel good and can do fun stuff. Other days, you feel sick and you're stuck in the hospital.” She had to miss a whole year of school at the beginning of her treatment because she was so sick.
Ney-Ney says there was one bright spot in her care. “The doctors and nurses were really nice. One time I wanted to go home for the Fourth of July, and they let me go home for a little while, as long as I came back every day to check in [with the care team].”
Of course, every child is different when it comes to how they handle their treatment. Abbey explained that while the treatment may look similar, every child responds differently to chemotherapy, both physically and emotionally.
She said, “Some kids experience a lot of side effects to chemo, whereas some experience very few. Some have a very difficult time emotionally, while others take it more in stride. My job is to meet them wherever they're at and provide whatever is needed in the moment.”
The impacts of a cancer diagnosis
Abbey noted, “When most people think of a child getting cancer, naturally the first thought is about the medical impact it will have -- but the truth is, having a child with cancer affects all facets of a family's life.”
The impacts of a diagnosis are far-reaching, including:
- the parents' ability to work due to the frequent hospitalizations and treatment needed for their child
- the child's ability to go to school, since they are most often too immunocompromised or too sick to attend
- a family's relationships with friends and family, since so much time and energy is spent caring for their child
All these things take a toll on a family.
The role of the social worker
As a social worker, Abbey and her colleagues in clinical social work help with all of those non-medical pieces that come up as a result of the cancer diagnosis and treatment.
With so many things for a family to manage during this time, it helps to have someone to guide them through their more tangible needs beyond the health care and treatment plan. Such things might include:
- assistance with applying for Family Medical Leave Act or Temporary Caregivers Insurance
- offering guidance on financial or housing concerns
- helping to navigate insurance needs
- coordinating with a child's school
When asked what helped her most during her treatment, Ney-Ney is quick to answer. “My friend who also has cancer. It's nice to have someone who understands what you're going through.”
This is another role for the clinical social worker as well. As Abbey explained, “I also provide emotional support and counseling for children and their parents to help them understand and cope with the diagnosis, prognosis, and treatment course.”
Going through something as serious as cancer at a young age is not something that will be easily forgotten. We asked Ney-Ney what she will remember most from her experience. Ney-Ney said, “The nurses and doctors…The very first nurse I remember is Debbie. She was the only nurse who could toast my bagels just right. She had many other kids to take care of, but always took the time to toast my bagel and made sure I had something to eat.”
She also remembers all the visitors who would come to the hospital, including Steve the cartoonist, and Erin from the Izzy Room. Ney-Ney also noted, “And I always liked Good Night Lights. It always gave us patients something to look forward to.”
Now, Ney-Ney is looking forward to completing her treatment early this summer, and is expected to remain in remission and cancer-free. We asked her about her plans for life after cancer. She said, “I thought about being a nurse or a surgeon, but I think I still want to be an actress. Maybe someday I might want to volunteer at the hospital or donate toys to kids in the hospital.”
Advice for coping with cancer
Through Ney-Ney’s experience, she has great advice for other kids who are facing cancer. “Try to stay in contact with your friends so you have someone to talk to. Be careful with germs so you don't get an infection or really, really sick. Make sure you bring some stuff to do in the hospital, so you don't get bored. Cancer isn't as scary as it seems -- you'll be okay!”
For families who are going through cancer treatment with a child, Abbey also has a few words of wisdom. “Parents, make sure you take care of yourselves! Nothing can prepare you when your child is diagnosed with cancer. But there are a lot of resources available for the families of pediatric oncology patients.”
She encourages families to make use of the many supports available to them. Whether it be financial assistance programs, parent support groups, or Make-A-Wish, don’t be afraid to use whatever will make your life easier.
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About the Author:
Lifespan Blog Team
The Lifespan Blog Team is working to provide you with timely and pertinent information that will help keep you and your family happy and healthy.
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