Pediatric Brain Cancer: Life During and After Treatment
Pediatric Brain Cancer: Brain Tumors in Kids: Life During and After Treatment -Part 3
When your child or loved one is diagnosed with a brain tumor, everything changes. Life may not feel “back to normal” for a long time. In the first two articles of this three-part series, we covered brain cancer statistics and facts. Now, let’s look to the future: what to expect during treatment and beyond.
During Treatment: What to Expect
Your child’s medical team will work with you to create a unique treatment plan for your child, based on their diagnosis and needs. This often includes chemotherapy and radiation. “Chemo” describes a broad category of drugs used to treat cancer. Radiation uses high-energy beams to destroy cancer cells.
Chemotherapy and radiation have similar side effects, such as nausea, hair loss, fatigue, and weight loss. (1) Children may lose their appetite or have trouble keeping food down. Try offering anti-nausea medication before meals, and stick to small, frequent portions of easy-to-digest foods.
Skin irritation, mouth sores, and rashes also happen frequently. Your doctor may be able to prescribe creams, ointments, or medicated mouthwash to soothe these issues. If painful mouth sores are present, serve cold or room temperature foods rather than hot foods.
These treatments also lower your child’s immune system. This leaves them vulnerable to infection. Help your child avoid getting sick by ensuring everyone around them washes their hands frequently. You may want to have your child wear a mask when they’re in public and limit exposure to crowds. Do not allow people to visit your child while they are sick.
Side effects generally improve when treatment is over, but healing may take time depending on your child’s overall health and which medications they received.
Preparing for a Stay in the Hospital
Your child will likely need to stay overnight in the hospital at some point during their treatment. They may become ill from the side effects of chemo or radiation and need to be admitted, or they may need to stay for monitoring after surgery.
It helps to be prepared. Here are a few tips to keep yourself and your child as comfortable as possible during a hospital stay:
- Pack an overnight bag for yourself and your child. Include medications, important items such as glasses or hearing aids, and comfort items like stuffed animals or toys.
- Plan for who will care for other children or pets while you’re gone.
- Contact your employer to plan for time off work, and contact your child’s school to plan for time away from class.
- While you’re there, write down questions as you think of them so that you can reference your list when the medical team stops by.
- Ask the nursing staff to explain procedures and equipment. They’re experts! Understanding what’s what can help you and your child feel less anxious.
- Remember to take care of yourself! It’s okay to take time away from your child’s bedside to eat, sleep, and decompress. Maintaining your health means you can be there for them. If you prefer not to leave your child alone, ask friends and family to give you breaks.
Going Home: Adjusting to Life Post-Treatment
Getting back to normal may take time. Your child will need frequent follow-ups, including clinic visits, lab draws, and imaging such as CT or MRI scans. If your child needs medical assistance at home, the hospital may be able to coordinate home nursing services. Many children may need physical, occupational, or speech therapy to regain skills lost during treatment.
Anxiety and behavioral changes are common in both the patient and other family members. Siblings may struggle with not getting as much attention as the “sick” child, and act out. Psychological support is crucial in helping the whole family heal. The hospital where your child receives treatment can connect you to social workers, mental health providers, and child life specialists.
Work with your child’s school to plan for their return to class. Getting back to familiar routines as much as possible may be comforting for you and your child.
After Pediatric Brain Cancer: Looking Ahead: Long-Term Changes, Challenges, and Celebrations
Surviving brain cancer is life-altering, even years into the future. Family dynamics shift, relationships alter, finances may be impacted, and anxiety and depression can persist. Continued support for the whole family is crucial.
Some children may deal with long-reaching medical problems or physical and cognitive deficits. Ongoing therapy and medical care may be required. Brain cancer treatment can cause struggles in school, as well. Children may develop learning difficulties or issues interacting with peers. Reach out to your child’s school for assistance as they re-adjust.
Work toward building a new support system for yourself and your family as you move toward a new normal, post-brain cancer. Look for parent support groups to find others who have lived the same experience. Your local school and hospital can offer guidance in getting your child and their siblings the help they need. Don’t be shy about asking friends and family for help; consider delegating logistics like picking up groceries or driving siblings to soccer practice so that you have a moment to breathe.
Pediatric Brain Cancer- Here are some further resources:
- Pediatric Brain Tumor Foundation (2)
- American Childhood Cancer Organization (3)
- The Sassy Carmen Foundation
Most importantly, take a moment to honor your resilience. If you’re able, give back to other families facing the same path; share your experiences and lend a helping hand.
Brain cancer is a heavy diagnosis. Truly, life may not feel the same after it’s over, but you’re not alone through this challenge, and there is hope on the other side.
References
- https://kidshealth.org/en/parents/side-effects.html#:~:text=Chemo%20drugs%20commonly%20cause%20rashes,happen%20all%20over%20the%20body.
- https://curethekids.org/
- acco.org
