When a child is diagnosed with a brain tumor or brain cancer, the initial impact the news has on the family is simply overwhelming. This is a crucial time for the patient, parents, and families, as well as for friends. Time is often of the essence; Quick decisions and quick actions are usually required, and in a split second, lives change forever.

Thus begins a journey down a very long and difficult road. Where do parents go for information? Who do they turn to for support? How will you know what is best for your child? It is imperative that these families have resources available to help them make the critical decisions they now face.

Fortunately, there are a number of exceptional nonprofit-sponsored family outreach and support programs that focus on brain tumors and brain cancer in children. These programs provide valuable resources for education, assistance, and support. While there are many reasons for parents of children with brain tumors to connect with a support group, three of the main reasons are discussed below.

Education

One of the first questions parents of newly diagnosed children with brain tumors and brain cancer ask is “What does this mean for my child?”

Family outreach and support programs can answer these and myriad other questions by providing resources for general disease awareness, treatment options, and even facilities equipped to provide the best treatments available. Support programs can also help families stay abreast of the latest research being done regarding treatments, survival, and the long-term effects for survivors of this deadly disease.

Assistance

Assistance for families embarking on this difficult journey can come in a variety of ways. It may involve locating the proper doctors and facilities to care for your child, or perhaps working through the maze of insurance forms and red tape. Researching financial aid options or finding local resources for supplies or services that may be needed for the child’s care and recovery are also ways these support groups can offer help to these families.

In addition to assisting individual families, these nonprofit organizations work tirelessly in advocacy and service of the overall mission: to find better treatments for children suffering from brain tumors and brain cancer, and to improve the quality of life of the survivors.

Support for

Above all, the parents and loved ones of these children need emotional support. They need to belong to a community of people who travel the same long road that they are on. They need to know that they are not alone on their journey.

The emotional support that is so freely provided in these family outreach programs cannot be found anywhere else outside of these unique groups of fathers, mothers, sisters, and brothers. Who can better understand the pain a mother feels when she learns that her instincts about her child’s health were correct? Or the pain that consumes a parent when he finally allows himself to cry, alone in the shower? And who better to share the joy when a family goes to survival?

These family support groups offer not only support to parents and extended family, but also to patients. Most support groups, understanding the cost of this terrible journey for everyone, sponsor a variety of conferences, camps, and other events throughout the year as a respite for families. These events provide opportunities to connect with others in this unique community, while also gaining information about educational and vocational opportunities.

Being well aware of the needs of bereaved families and also the families of survivors, there are also support groups that specifically target their needs. Some of these groups have mentors; parents who have been in the same place, who work with families in a variety of ways as they go through difficult transitions.

Education. Assistance. Support for. Connecting with the right support group is essential for parents and families facing this difficult journey. Parents, you are not alone. Help is out there, waiting for your call.