Archive for January, 2009

Hi all! The dates for Camp Sunshine’s Retinoblastoma week have been announced. It will take place on June 14-19th. For more information, go to www.campsunshine.org. Don’t miss out on this opportunity to meet other Rb families and kids!

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So sad to report that Ben Underwood has finally earned his wings and entered into Heaven. We pray for his family, his friends, and all those who he inspired during his short life here with us.

Ben was diagnosed with bilateral retinoblastoma when he was young. He gained fame when news that he had been using echolocation caught interest of the general public as well as scientists and doctors. Ben navigated his world without the use of  a white cane (which is controversial to some). Many parents admired his mother, Aquanetta’s, approach to parenting — which was to never allow Ben to be treated as if he were disabled. She pushed him, and he thrived. Ben’s recent diagnosis and passing reminds us all that cancer is cancer; illness is illness; and that while we experience periods of “wellness”, the fear sometimes never leaves us.


The link to his website also has a donation button to donate directly to his family.

Ben, thank you for inspiring so many people with your courage, your faith, and your belief that all things are possible. We will never forget you.

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Ben Underwood and his mother, Aquanetta Gordon

Ben Underwood and his mother, Aquanetta Gordon

A few years ago, my child was diagnosed with cancer. Thankfully, she was treated with very aggressive therapy became cancer free. But, that doesn’t mean we don’t think every single day about cancer. Every headache — is it a tumor? Every stomach ache — is it a tumor? Every fever — is she sick again? For my friends with kids who are healthy, a headache is a headache, a stomachache is a stomachache and a fever is a fever. While we no longer run to the oncologist when this happens, I end up somewhat sleepless at night wondering if cancer cells escaped chemotherapy. I wonder if some wacky strain of radiation-resistent mutant cell managed to exist, find a new playground and spread.

People have even corrected me at times – “J doesn’t have cancer. She H-A-D cancer.” Technically, yes. But, my family and I continue to feel the repercussions of it. We never stop worrying.

Not too long ago, a wonderful news story broke about a phenomenal young man named Ben Underwood. At the time, he was about 13 years old. He was blind from eye caner and developed the unique skill of echolocation – the use of clicks and “sonar like” listening to figure out where he is. He never used a white cane. He never used a guide dog or any assistance. Scientists were fascinated by his ability. Cancer kids heard of Ben and articulated how COOL he was! Parents embraced his mother, Aquanetta, for her insistence that her son was not disabled in any way.

Recently, news broke again about Ben. Unfortunately, Ben has developed cancer in the rest of his body — about 10 years after he had initially been “cured” from cancer. According to the article, Ben is getting weaker by the day, and he will likely be on this Earth for weeks… months. Ben has told his mother that he is ready. He will go to sleep and wake up in Heaven.

The story breaks my heart, of course, for the many reasons that others are so touched by his life. But, as a cancer mother, it brings back a sense of reality that we will never stop worrying about every headache, stomachache and fever. That we know there may be a day when Tylenol or a good ice pack will not be enough.

Our prayers are with Ben and his family. We know that God has chosen a beautiful angel on this Earth and in Heaven.

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