Our son, Anthony, was 3 months shy of his 19th birthday when he was diagnosed on April 19, 2007 with Stage 4 Esophageal Cancer. Due to Anthony’s age, we found many gaps in his treatment. While there were many support groups for Pediatric’s (as there should be), we found no emotional or financial support for Anthony’s age group. To summarize the gaps, I would have to begin with the fact that Anthony was told up front that he had only 9-12 months to live. At that moment, he lost hope and without hope, there is no fight, and without the will to fight, it brings terrible anxiety and depression, both of which Anthony suffered daily. The anxiety that he experienced before, during and after treatment were inhumane. It is impossible for me to comprehend that his hospital did not have a properly trained Psychiatrist who deals with his age group and could provide medicine for his depression. The only Psychiatrist on staff told him, “you know you’ll succumb to this disease.” He may have been an “adult” to the world, but at 18, a young adults brain isn’t even fully developed, let alone to be expected to handle that kind of diagnosis. I cannot drive home enough how this lack of emotional support affected Anthony and all of us.
Another gap was there wasn’t any nutritional support or guidance on how best to deal with the side affects from the chemotherapy. While the nurses were helpful, it would have been extremely beneficial to have a nutrionist on staff to help me with his side affects such as his lack of appetitue, nausea and other physical issues that developed. The lack of a support group of young adults Anthony’s age was very apparent. There simply wasn’t anyone or anywhere he could turn to for conversation or to share his experience with. Fertility issues were another gap. They weren’t even brought up, until after his chemotherapy. When he was told he may be sterile, it added to his anxiety and depression. I don’t ever want to see another young adult and their family suffer as we did.
I feel so strongly that this age group “falls under the radar” for help. It is our mission to bring attention to this, as a way to help others and honor our son’s legacy.
Cindy is Anthony’s mother, and has dedicated her time to bringing awareness and education to the issues surrounding adolescent and young adult cancer.
Originally posted in June 2009.