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Children's Cancer Care: A Parent Guide

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Finding out your child has cancer is shocking and scary. There are so many unknowns and you’re filled with tons of questions.

Cancer is Hard

Even with a great prognosis, when doctors predict they’ll be able to cure your child’s cancer, cancer is hard. Chemo takes a toll on small bodies. The rigors of hospital visits can stress out the whole family. No one can fully avoid that cancer causes physical pain and brings up issues of death, too.

Childhood cancer is more than a physical disease. It affects your entire family mentally, emotionally, and financially. Our whole team is here to support your family, no matter the need. We’ll help you know what to expect throughout treatment and beyond.

What to Expect During Treatment

We’ll tailor your child’s treatment to their type of cancer. This will determine how long treatment lasts.

We treat many childhood cancers, like lymphomas and leukemias, with chemotherapy first. We give chemo in rounds that last several weeks. Your child may need to spend several days a week at the hospital.

You’ll have a lot of appointments. Your child will have blood tests, injections, and IV lines. Often kids need treatment for several years.

We’ll be treating the cancer, but we may also have to treat your child’s side effects. Some kids have extreme nausea and have a hard time eating. We’ll help you monitor your child’s weight and nutrition and find ways to keep up their strength.

Your child will also be at risk for catching other infections while going through chemo. You’ll need to practice good hygiene and try to keep them from getting sick.

For other cancers, we may do surgery or use radiation. Children usually spend time in the hospital and continue treatment at home.

Your Child’s Emotions During Treatment

How your child reacts to having cancer will depend on personality, age, and other factors. Older kids may feel abnormal, left out as their peers grow and develop. Younger children may feel scared and needy. Kids at any age can get anxious, depressed, acting these out in ways that could surprise or worry you.

However your child handles it, having cancer will impact them emotionally. Talking to a counselor can help you figure out your own feelings as well as how to help your child deal with theirs.

We have social workers and psychologists to provide the emotional support you need. We can also connect you with resources and foundations to help with a variety of concerns, like:

  • Talking with your child about their cancer
  • Coping with emotions
  • Anxiety, depression, and post-traumatic stress disorder (PTSD)
  • Helping your other children cope
  • Insurance, costs, and financial hardships
  • Managing work and school, including FMLA, leave without pay, and flexible scheduling

Practical Concerns & Logistics

During treatment, you’ll need to decide who will care for your child in the hospital and at home. Outside the hospital, your child will have a lot of clinic visits. You may need to find care for your other children. You’ll also have to decide how to handle other family and household responsibilities.

Make a list of relatives, friends, neighbors, coworkers, church groups, or other community members and their phone numbers. Don’t be afraid to ask for help. Most people want to help; you just have to tell them what you need.

Paying for Care

We’ll help you understand what your insurance covers and the costs of your child’s treatment.

If you have trouble paying for care, we offer financial assistance. We can also find government programs and foundations to help pay for care.

The Bradley W. Jackson Foundation helps families pay for childhood cancer care. The fund was created in memory of Bradley W. Jackson, who lost his battle with a brain tumor at 19.

We understand there are costs beyond hospital stays and clinic visits. Our social workers can help you find ways to pay for childcare, lodging, travel, and other expenses.

Hospital Stays and Clinic Visits

See our guide to your child’s hospital stay to learn about:

  • COVID-19 procedures
  • Admission processes
  • What to bring
  • Visitors

See directions, parking, and more.

View our guide to clinic visits.

Finding a Place to Stay

If you live far away, you may need to find a place to stay near Charlottesville. UVA Hospitality House and several area nonprofits offer places to stay at a low cost.

Learn more about lodging options.

Coping With Treatment

Young children may not understand what cancer means. Our Child Life Specialists help your child understand their cancer and cope with treatment. We ease your child’s fears and helps them feel in control.

Child Life Specialists work with families to create coping plans for medical procedures and treatments, including:

  • Helping your child learn what to expect
  • Playing with your child or offering distraction items
  • Comfort from parents and caregivers (such as parents holding the child during the procedure)
  • Honoring your child’s choices (such as giving a countdown before a needle stick)

Managing School

Our Hospital Education Program offers instruction and school services to children treated at UVA Children’s at no cost to their families.

In The Hospital

When your child goes into the hospital, one of the program’s teachers will meet with you. You’ll have the option to unenroll your child from their school and enroll them with the Hospital Education Program. Your child can receive instruction from certified teachers at the bedside or in our classroom.

Homebound

After your child goes home from the hospital, they can receive homebound instruction. A teacher from your child’s school will get your child’s assignments and help your child at your home or through a virtual session. Homebound instruction bridges the gap between the hospital and going back to school.

Returning to School

When your child returns to school, they will need a 504 plan. These plans address the needs of children with a medical condition expected to last 6 months or longer. It covers physical, emotional, learning, and social needs. We’ll give you a detailed list of recommendations for your child’s school to use when creating your child’s plan.

504 plans may include:

  • Keeping your child with friends or finding friendly classmates to help them
  • Allowing access to the nurse anytime
  • Instructions for the nurse, including when to call you
  • Physical concerns, like access to the restroom or elevator
  • PE and recess restrictions due to physical health
  • Neurocognitive issues and possible behavior changes
  • Information on late effects and signs to watch for
  • Modified work assignments with flexible deadlines
  • Modified attendance policies
  • Special allowances, like eating outside the lunchroom or wearing a hat

After Cancer

Children who recover from cancer can grow up to have healthy, whole lives. But they’ll always need to take precautions and get checkups. Adults who had cancer as a kid face some health risks. Learn more about survivorship