Research that
Benefits Children and Families – Uplifting Stories
As some of you may know, my brother has cerebral palsy. By the age of 20, he had more surgeries than
any one person should have to endure in a lifetime. Then came the news that at 26 years old, he
was diagnosed with bladder cancer. It was
devastating to him and my family. Hadn’t
he suffered enough? Well, my parents and
sister met with the oncologist who went over his medical treatment plan. They were to remove his bladder, prostate gland,
and surrounding lymph nodes. Then came
the issue of chemo-therapy and radiation.
Because his cancer was an odd form that had built inside the wall of his
bladder rather than creates a solid mass, there was not much research on the
effects of radiation on this form of cancer. Furthermore, the research that
existed, could not prove that radiation made an impact on the treatment of
these types of cancer patients. So, my parents elected to not subject him to
radiation treatments. When they weighed
the risks/benefits of radiation treatment for him, they felt there just wasn’t enough
research out there to support this form of treatment. They proceeded with the scheduled surgery and
chemo-therapy for my brother. This happened
in the fall of 1992. My brother is still
cancer-free today and enjoying life with my parents in Florida.
Oh Dianne, what a relief it must have been for your parents to know that they had made the right decision. It would be interesting to see twenty years later if there is any science has managed to add any information to their research regarding this particular type of cancer. Thank you for sharing your story.
ReplyDeleteWow Dianne... What an inspiring story to put this importance and of research into perpective! You really relayed the true risk benefits of a personal experiece and how research and the lack of impacted your decison making for your brother. I think that this story truely opened my eyes about the importance of this class. I felt up until now that because I do not enjoy the research process that non of my career work would benefit families in that way, I can see how it possibliy could in the future. Thank you for sharing!
ReplyDeleteHaley
In reading our colleagues stories it is evident that research has impacted each of in personal ways. I wonder if educators allow parents the respect to make choices about their children's treatment. My personal experience and observation from outside the elementary school system is that they create a wall with the statement -we know what is best for kids, don't interfer. Parents have to be aggressive and persistent to have their perspectives valued.
ReplyDeleteDiane, thank you for sharing your personal story and tribulation. I have a hearing impaired brother. My mother had rubella during her first trimester of pregnancy and by middle sibling (brother) was also born with other birth defects. Another includes one of his legs being longer than the other. As a child, I remember a minor surgery being performed to insert an extension to extend his shorter leg. My brother was required to wear a brace to help the extension. I'm not sure if the procedure was exploratory or not, but the end results were not successful As an adult, his legs are still uneven and his spine has started to curve. It is quite possible he might end up in a wheel chair one day.
ReplyDelete