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An Inspiring Story

29 Nov

The first two years of medical school are traditionally when students learn the scientific knowledge that serves as the basis of medical practice and research. Most students are more motivated to acquire this knowledge when they see how it connects to human health. Accordingly, many medical schools now teach at least some of their basic scientific concepts through illustrative clinical cases.

As part of a team helping to create the curriculum for the new UT Dell Medical School in Austin, I was recently given the assignment of writing about retinoblastoma. Since this is a cancer that occurs in childhood and I see exclusively adults in my practice, I do not have experience treating patients with retinoblastoma. When I set about researching actual cases of the disease, I came across the story of Ben Underwood. When Ben was two years old, his mother Aquanetta noticed that his right eye had a peculiar glow. After an examination by an ophthalmologist, Aquanetta was informed that Ben had a tumor called retinoblastoma in both of his eyes.

If left untreated, retinoblastoma will spread backward from the eye socket into the optic nerve, and then into the brain. Ben began chemotherapy, but after two months his right eye was consumed with cancer that it was removed. This was followed by an additional eight months of chemotherapy and then six weeks of radiation in attempt to save the left eye. When this treatment did not work, Aquanetta made the agonizing decision to have his left removed in order to save his life.

When Ben awoke from his second surgery, he said, “Mom, I can’t see anymore. Oh, Mom, I can’t see.” Aquanetta writes that “after praying for strength, I said, ‘Ben, Yes you can see’ and I took his little hands and put them on my face and said, ‘See me, you can see me with your hands,’ next, I put my hand to his nose and said, ‘Smell me, you can see me with your nose,’ then I said, ‘Hear me, you can see me with your ears, you can’t use your eyes anymore, but you have your hands, your nose, and your ears.’”

Ben’s mother and siblings worked hard to help him adjust to life without vision. Around age six, Ben began making clicking sounds with his tongue that enabled him to make sense of his surroundings by listening to the echoes bouncing off of objects. This process, known as human echolocation, is similar in principle to the sonar and animal echolocation employed by bats, dolphins, and toothed whales. Over time, Ben became so skilled at echolocation that he could accomplish such feats as playing basketball, riding a bicycle, rollerblading, and skateboarding. He was featured on the Ellen DeGeneres and Oprah Winfrey shows and was the subject of a program called The Boy Who Sees Without Eyes aired on the Discovery Channel.

I encourage you to watch the video I’m linking here. It’s a beautiful story of love, courage, hope, resilience, and faith.

Sadly, in 2007, a tumor developed in Ben’s sinus cavity and despite intensive treatment, he died two years later at age 16. This year, his mother Aquanetta released a book she wrote about Ben called Echoes of an Angel. It just arrived in the mail and I look forward to reading it.

 
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Posted by on November 29, 2014 in Uncategorized

 

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