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Posts Tagged ‘retinoblastoma’

Hi everyone!

While retinoblastoma is a rare pediatric cancer, there have been a few celebrities whose lives have been touched by this cancer. Most notably, survivor Peter Falk, Hunter Tylo’s daughter, Derek Fisher’s daughter, and Matthew Ashford’s daughter. And, certainly other retinoblastoma survivors are little celebrities in their own right: Tacey Raulerson (Miss “Tough Enough to Wear Pink”), Ben Underwood (who passed away a few years ago), and Kyle Lograsso (a 7-year old bilateral rb golf wiz!).

 

For years, Days of Our Lives worked with Retinoblastoma International (www.retinoblastoma.net) to raise awareness and funds for early detection. They were also the driving force behind legislation in California to pass early detection and screening for infants.

 

This past week (12/14/2010), Days of Our Lives introduced a storyline of an infant having a “white glow” in the eyes in photos. To the retinoblastoma world, this is leukoria — one of the red flags in identifying retinoblastoma.

 

PLEASE send Days of Our Lives feedback as a way to keep this story line going. This storyline will have such an incredible impact on saving the lives, and vision, of so many infants and toddlers.

 

Follow this link to leave a comment on the 12/14/2010 episode in support of the retinoblastoma story line. The storyline synopsis is here:

Gabi and Will hover as Rafe studies the photos of Johnny. He acknowledges that Johnny’s pupil in his left eye is white, but thinks it’s nothing serious. They decide to reprint the photos, but later realize Johnny’s eye is still white. He assures Will and Gabi that it’s probably a reflection of the light, even though it’s in every photo. He tells Will not to tell Sami so as not to worry her over nothing. Will agrees. Later, Rafe wants EJ to see the photos, but EJ refuses and kicks Rafe out of his house. Rafe is about to call Lexie when she appears on his doorstep. He tells her he needs to talk to her about something important.

 

Thank you! And a happy, healthy holiday season to you all!

 

Liza

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Hi friends!

I wanted to use this space to link to any YouTube videos that people have of their retinoblastoma story.

When Joli was diagnosed, I knew I wanted to document our journey. I wasn’t sure what purpose it would serve at that time, but I knew I had to do it. Thankfully, we put together a  great video that shows some of the reality of the Rb process but also the strength and beauty of a survivor.

Now, 5 years later, people have emailed to ask about Joli’s progress. In her own words, we created a very quick video (no tripods or anything fancy — this was done with a camera propped up on a sock and a book cover!) for people to see how amazing she has grown up to be and how good she is with her prosthesis.

One of my all time favorite videos is of Leah, one of Joli’s best friends from Camp Sunshine. It’s just so perfect.

We hope that this site has been a source of positive information for you! Please be sure to contact us if you have any questions at all!

Thanks!

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Please check out this amazing tribute to one of our Rb children — Leah — by her mother.

 

For those who may come across this as a newly diagnosed family, there are pictures of Leah at all stages of treatment. I think most of us can say that these pictures represent a very accurate sense of what you might go through/are going through.

 

Thanks to Leah’s mom for allowing us to post this on our site!

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Happen to be watching “House” tonight on FOX, and the “patient” is a retinoblastoma researcher! Hurray! Way to get some exposure! (although, one of the doctors makes a comment that he “saw a 4-year old retinoblastoma patient on his oncology rotation” — which, we all know that, more likely, a child is around 2 years old!

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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.

http://www.benunderwood.com/

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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An RBNE family will be speaking at a fundraiser for Camp Sunshine on Friday, Dec 5th at Southern New Hampshire University. If you are not familiar with Camp Sunshine, please visit their website. This is an amazing opportunity to meet other Rb families from all over the country! It was a huge moral booster for so many of us, and we often point to our Camp experience as the turning point in our lives!

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For the past few days, I’ve been trying to find information about how to get my daughter’s blood tested for genetics for Rb. Many parents have had the opportunity to have their child’s tumor tested, but our tumor was not viable 3 years ago to test (or at least we haven’t ever heard anything).

At the encouragement of many Rb parents, we have been trying to research getting my daughter’s blood tested. And, geez — you’d think I was trying to find the secret of life or something. It has been nearly impossible to try and find anyone who has done Rb testing, or to find anyone who knows anything about Rb testing. I’ve felt like the “it” person in that game where everyone knows the “secret code” but you, and you’re job is to find out. Very frustrating.

So, as a “seasoned cancer mom”, I thought this whole process would be a quick few phone calls. It hasn’t been. I’ve spent more than a few days, hours, and pads of paper scribbling down notes/names/numbers of people who never call me back.

But, as the title describes, sometimes it just takes 1 person to go the extra step and help you. That person is my friend, Marie. Thanks to Marie, she took the time to find out some info for me, and within minutes, I was on the phone with Children’s Hospital scheduling an appointment for my daughter.

Sometimes it takes 1 person with an answer, an additional question, and a caring heart to help. Hopefully RBNE is that “person” for you if you are struggling with a new retinoblastoma diagnosis.

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Just wanted to re-post another Welcome message for the people who are finding the Retinoblastoma New England site due to the awareness that the Today Show and other media have raised for Rb.

Feel free to surf around this site and learn more about retinoblastoma, our own personal story with this eye cancer, and for some words of encouragement.

Unlike the child who was diagnosed in Florida, my daughter Joli was diagnosed at an eye exam at age 2. By then, her tumor was at stage 5B, which meant it was at the base of her optic nerve. We can’t imagine what another few days or weeks would have done….

The leukoria, or white reflective glow, is definitely the first sign that most people see. Though, by the time there is a noticeable leukoria, it’s usually because the tumor is so large.

As the first grandchild, and our first child, Joli was photographed at every turn! And, now that we know about retinoblastoma and leukoria, I’ve combed through every single photo we had ever taken over the first 2 years of her life. What’s difficult is that the conditions almost have to be “just right” in order to see the leukoria. In some photos, there isn’t leukoria — and in the next photo, there it is, large and in charge.

So, welcome to the Retinoblastoma New England site! Please drop me a comment if you have any questions or need some support!

Peace,

Liza

 

The following is a poster in Spanish that was produced by the Daisy Eye Cancer Fund (based in UK) with Joli as the poster child. Please visit their site, or print this photo to be placed in your office, lobby, etc. We’ve seen the power of knowledge, as highlighted recently in the press, and know that awareness is how we will save sight and lives!

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