Anthony’s Journey…
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.
Cancer Fighters | sarah | June 18, 2009
Hello Cindy-
I agree 100%. We had the exact experience when our son was diagnosed at age 15. My son has an adult understanding of his situation, but with no life experiences to help him deal with his situation. No one in the children’s hospital had the first clue as to how to handle this. Their “specialist” showed up with crayons and stuffed animals.
I also found that the treatments were wrong for teenagers. We had to fight for higher doses, especially painkillers. They just had little experience with a 6′ 2″ young man.
I understand the average age in a pediatric cancer hospital is 7, with only 12% of the kids above age 13. The average age in the adult hospitals is 65, with only 5% under the age of 24. They truly are an ignored generation.
We finally ended up at with the Adolecent Young Adult group at MD Anderson, which was a big improvement. Our son is now 17, and in remission.
Hi Cindy, My name is Colette and my son, Christopher, a 20-year-old, was diagnosed in February 2009 with Angioimmunoblastic T-cell Lymphoma (AITL), one of the rarest and most aggressive forms of cancer. He was given a life expectancy of six months untreated or possibly 1-3 years with bone stem transplant and is currently being treated at Mayo in Arizona.
The diagnosing process began back in approximately September of 2008 but to do the rare form of cancer he has it took a while to get a diagnosis.
I have been seeking Youth/Adolescent Support Groups and completely agree with every word you have mentioned. During attendance at various chemo classes, etc. we are in with groups of cancer patients well in there 60′s on up, and I have not run across one other person even remotely close to my son’s age. No one has mentioned any support groups to him other than that for the “cancer survivors.” What about support for him? Obviously he is not a toddler so does not fit in there, nor does he fit in with the elderly – his age group is out having fun, experiencing their young and new found independence, trying out new jobs, planning their college education, etc. while he is trying to keep up with his treatment schedule and avoid being exposed typical coughs and colds in the public.
His attitude remains good, even with this poor prognosis, and he is still wanting to meet others his age and seems to just want to “fit in” and have friends, which is rather difficult given his type of schedule.
Hopefully I will find something he can participate in locally with others that have these horribly unfortunate common issues.
If anyone knows of Adolescent Cancer Groups in Arizona, please post as many as possible. My prayers are with all of you! Good luck.
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