Gliomatosis cerebri

School

School is not only a place where children learn, but also a space to socialize and share with friends. As far as possible, children should continue to attend school as it usually has a positive impact on their quality of life.

It is essential to talk to the school team, including your child’s teacher to discuss how to explain their disease to classmates and to have a process in place as the disease evolves. For further information and resources, please consult the Canadian Cancer Society on school.

Siblings

Siblings often suffer collateral problems from having their brother or sister diagnosed with a paediatric cancer. They are at risk of receiving less attention, leading to behaviour and emotional problems. Ensuring emotional and social support for the whole family (patient, parents, siblings and other relatives) is essential for good quality of life and for managing disease related stress over time.

 It is important to discuss the disease with siblings, and to prepare them for the end of life process. This will help to decrease their anxiety and reinforce a supportive family environment. Alex’s Lemonade Stand has online resources to support siblings and has a SuperSibs program in the United States.

​​​​​​​Support groups

External support groups can be helpful when dealing with a recent diagnosis. It is also helpful to share experiences with families and friends who have been affected by a similar condition.

Close friends and relatives are very helpful in coping with the new situation. However, sharing with people who are going through the same situation can sometimes be even more beneficial. Often, you can share disease related issues with them that are hard to understand if you are not living with a similar situation.

You can ask your healthcare team about patients associations related to your disease. If you also wish to have an online resource available at any time, you can find people to talk to in the Share4Rare community.

GC families came together to form GC Global, an international association for patients and families affected by gliomatosis cerebri. They have an active  Facebook group, where you can get recommendations such as:

• Asking for a copy of all reports, proofs, tests, results, clinical documentation, imaging scans, etc. These can be useful to get a second opinion or to get into a clinical trial.  They may help your child avoid repeating a test. They may also be helpful in emergencies.  
• Writing a disease diary, including information about disease progression, medical conclusions and any questions you have can be helpful for times when your doctor is not available. It is also recommended that conversations with doctors be written down, as information can be overwhelming and hard to process.