Childhood Brain Tumours are different to Adult Brain Tumours because their brains are still growing and developing.
This means that the side effects that childhood cancer sufferers experience will generally be unique to their age and stage of development.
The side-effects of a brain tumour can be taxing on both the child and the parents, as well as the family and even teachers and classmates.
It is important therefore that you take note of how your child is feeling and what problems they are experiencing and that you talk to them about it – remember though that they may not feel like discussing what they are going through.
It is also important the you discuss any side-effects with their oncology team, who should be able to help or refer you to professionals who can help.
Physical Side Effects
Side effects from treatment occur because healthy cells are damaged in the pursuit of eradicating cancer cells. They can occur right away, or manifest themselves years later.
Some examples include:
- If your child has a central venous line to transmit chemotherapy medication (also called a CVL, a port or a central line) it may cause an infection. A fever and chills may indicate infection, as may redness, swelling or pus at the site of the port.
- Fever and Chills may also be the sign of a blood infection as chemotherapy or radiation may damage some of the cells that typically fight off infections.
- Anaemia, or low red blood cell count, can also be a side effect of cancer treatment. When the red blood cell count is low, it lowers the amount of oxygen in the body, causing tiredness, shortness of breath, headaches and dizziness.
- Cancer treatments to the head and neck can also cause mucositis, or mouth sores. These can be relieved by drinking plenty of fluids and rinsing the mouth several times a day. However, if the sores are particularly painful or lead to decreased eating and drinking, talk to your health care team about other treatments available.
- Fatigue from treatment is a common side effect. Regular, appropriate exercise and a consistent sleeping schedule can help relieve this symptom.
- Pain is another common side effect, whether from the tumor itself, from side effects such as mouth sores, or recovery from surgery. There is much you and your child’s medical team can do to make your child more comfortable.
No one needs to tough out serious side effects. Talk to your medical team about any symptoms that your child has. There are many medications and treatments available to ease side effects.
Eating and Nutrition Issues
The side effects of treatment may also cause children to change their eating patterns. To combat the cancer and handle treatment, the body may need additional nutrition, or it may use the nutrition it receives in a different way.
- Nausea and Vomiting are common side effects of brain tumor treatments such as chemotherapy or surgery itself. It is helpful to record incidents of nausea and vomiting as anti-nausea medications may be available to relieve symptoms.
- Taking steroids may cause children to have a dramatic increase in appetite.
- Radiation Therapy may cause irregular eating patterns, or alter how foods taste – children may describe foods as having no taste, or being too salty, too sweet, or even metallic-tasting. Other feeding/eating issues include loss of appetite, feeling full although no food has been eaten, or experiencing diarrhea, cramps, constipation, a sore throat, or a dry mouth.
Emotions can run high during mealtime for any family – and even more so for those dealing with a brain tumor and treatment. If possible, try to be as understanding as possible at mealtimes. There will be on and off days as far as eating is concerned.
In addition, although you may want to maximise nutrition during this time and only stick to “healthy” foods, remember that sometimes, eating favourite foods can be both a source of pleasure and calories.
Check with your child’s medical team anytime you have questions about eating issues. Dieticians who specialise in eating during cancer treatment can help answer many of your questions.
Other tips for dealing with eating changes:
- Keep fluid intake up and avoid dehydration by offering small amounts of liquid frequently. You can even provide multiple teaspoons full during relaxing activities such as reading or watching TV.
- Easy-to-digest foods, such as crackers, rice, toast or soup may “stay down” better.
If your child is losing weight, add extra calories to everyday foods. Adding peanut butter to toast or instant breakfast mixes to milk can increase their caloric value.
Changes in physical appearance
- Losing hair, surgical scars, or gaining or losing large amounts of weight all can be devastating to self-esteem and self-image, particularly to those in adolescence. These changes can also be devastating to parents as well.
Be open and honest with your child about what may happen, and include them in discussions about how to manage these changes. In addition, be honest with yourself. Although your child’s appearance may be disheartening, remind yourself that they are the same person inside, and make sure to show and articulate that you love them no matter what they look like.
Additional tips to help with changes in physical appearance include:
- Baldness: If your child wants to try a wig, your local CANSA Care Centre can provide acrylic wigs. You can also contact CANSA’s Kindest Cut campaign for real-hair wigs. Consider buying one before treatment begins so you can match your child’s hair colour. Other children may prefer to wear a baseball hat or bandanna.
- Steroids may cause acne, weight gain, and the appearance of a puffy face. Prepare your child for these potential changes, allow them to vent, and validate their feelings.
- Humour can be a wonderful way to handle these conversations. Humour also works well to break the ice to begin talking about appearance with the child’s peers.
- Support: It can be extremely beneficial for both patients and parents to meet with others who are undergoing the same experience. There are many support groups that can be found online, including those offered by CANSA’s Tough Living with Cancer (TLC) Programme
Cognitive and Emotional Side Effects
Many changes during the brain tumour journey depend on factors including a person’s age, tumour type and location, treatment type and duration. In addition to the common personality and emotional changes patients undergo, children are still in the midst of development and may experience other psychological symptoms.
Previously independent children may become more clingy. Others may show regressive behaviour, and others may experience cognitive symptoms, such as having trouble reading or speaking.
Mention any and all changes to your child’s oncology care team as they have resources and experts who can help children manage these changes.
Long-Term or Late Effects
In addition to side effects experienced during the disease state and treatment, children who have experienced brain tumours can exhibit what are called late effects – side effects of treatment that present themselves months or even years after treatment ends.
Typical aftercare protocols include yearly monitoring for potential late effects. Most large paediatric brain tumour treatment hospitals and organisations have long-term survivor programs that include health monitoring and intervention services well into adulthood.
Follow-up can also be provided by your child’s paediatrician, the paediatric neuro-oncology team that treated your child, or the medical team at a long-term follow-up clinic.
The most common types of late effects are:
- Changes to the endocrine system. Damage to these hormone-producing hormones due to the tumor or treatment can cause pituitary problems, growth hormone deficiency, early sexual maturation, obesity and thyroid problems. While none of these conditions are life-threatening, they should be monitored as treatments are available.
- Neurocognitive Problems are an unfortunate potential side effect of childhood brain tumors. These can vary widely, and can affect intellectual ability, academic achievement, memory and attention. Potential problems can be assessed by a paediatric neuropsychologist who can help determine the types of issues that need to be addressed and their treatments.
- Neurological and Neurosensory Problems can appear soon after a diagnosis but can also develop long after treatment has completed. These can include impaired vision and hearing.
- Children may also experience Social, Psychological or Behavioural late effects. These can be triggered by events such as transitioning back to school or dealing with peer relationships. While many children go on to be psychologically healthy, childhood brain tumour survivors are more at risk for feelings of social isolation, difficulty relating to peers, depression and less-than-optimal educational and professional achievement.
Late-effects intervention can include counseling with a psychologist or social worker.
Many families continue to record side effects long after treatment has ended, so it may also be helpful to create a medical data sheet to share with new medical professionals as the child grows up to more easily communicate the child’s history and potential risks.
In a recent study, approximately 33% of parents of brain tumour survivors experienced parenting problems for which they did not receive help. Difficulties in care-giving can last far beyond the initial treatment of a child. Asking for help is both normal and expected.