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A PARENT’S PERSPECTIVE TO A SON’S BRAIN TUMOR DIAGNOSIS

By Stacia Wagner
Tuesday, December 13, 2011

I’m reading an article in the Long Island Press written by Lori Ames. Lori is the mother of Robert Ames, a young adult who was diagnosed with a brain tumor last October. The article brings to mind several things which we frequently hear from parents and survivors in the young adult community.

The first point is the fact his brain tumor was missed at several hospital visits. When it was discovered, he had to have emergency surgery. She states “He might have had the tumor for 10 years. No one ever connected the symptoms.” Many parents question the “What if?” Even the best parent and patient advocates and the best doctors miss signs.

Lori also talks about the fact her son was worried about her. His diagnosis and treatment made a change in her employment necessary. Even though Robert was dealing with treatment and many changes, he became a unique type of support for his mother. The family came together to make decisions. In order to be with Robert, Lori left a job she had been at for more than 20 years and ended up starting her own public relations firm, PR Freelancer, Inc. This speaks to the fact young adults worry about their parents as much as they worry about their own health and brain tumors greatly impact financial stability and employment.

Lori also talks about the feelings of isolation, loneliness and desperation as they dealt with the diagnosis, treatment and recovery. She talks about the unique bond the family found in each other. Many families talk about the loneliness of a brain tumor diagnosis. In addition, for many young adults who are starting to assert their independence, this change affects that independence. While strengthening the bond with their parents, it may mean loss of bonds with their peers.

Lori closes the article with this quote “We try to laugh a lot because, believe me, there were plenty of tears.” A great example of their humor is the bold quote in the center of the article “Boy survives brain tumor: Killed by mom’s cooking.”

We are honored to have the Ames family as part of the CBTF family. Thank you for sharing and opening the door to others who travel down the brain tumor road.

We hope other families share their thoughts here.

The original article is in Volume 9-Issue 45 of the Long Island Press.

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