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It’s Rb awareness week all! Please take a moment to know the signs and symptoms of Rb and spread the word!

We love our survivor, Joli, and all the amazing people we’ve been blessed to have in our lives.

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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

RbNE October 2010

Thanks to all the people who turned out for our October 2010 Retinoblastoma New England get together. It was a beautiful day for apple picking, going through the corn maze, and a trip to the country store. It’s always such a treat to see old friends and new friends, and to see the kids have such a wonderful time together!

 

I always believe that encounters happen for a reason. I found myself a few dollars short of being able to go into the Corn Maze with the family, and was a little disappointed. I happened to strike up a conversation with a woman who was waiting for her own kids to finish the corn maze, and it turns out she is a photographer specializing in photographing infants and toddlers! We had a really extensive conversation about retinoblastoma, leukoria, and the chances of actually detecting it “by accident” via a photograph. Even this woman had said, “We were meant to meet today.”

 

I hope that she is one more angel in this fight for early detection of retinoblastoma, especially given what she does for a living.

 

As always, if you would like to join us for our next RbNE get together, please leave a comment here and one of our RbNE parents will get back to you!

 

Peace!

Liza

 

Peace!

RBNE GET TOGETHER!

If we have enough people RSVP…

The next Retinoblastoma New England get together will be on Monday, October 11th from 11am-2pm at Stonehill College, Easton, MA. Easton is approximately 30 minutes south of Boston, 2 hours from Hartford and New Haven, CT, and 4 hours from New York City.

There are reasonably priced hotels just a few miles from campus. If you are traveling far, we suggest you stay at one of the area hotels on Sunday night.

Activities include games, arts and crafts, and lots of food! We ask that each family brings either a dessert, side dish, or drink to the event.

Please comment or RSVP by emailing Liza@rbne.org.

Thank you!

Retinoblastoma Videos

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!

Thank you, Camp Sunshine, for yet another wonderful Retinoblastoma week! This summer was the 4th year that retinoblastoma had its very own diagnosis week, and the program has grown by leaps and bounds! In the first year, there were only about a dozen families. Second year had approximately two dozen. Third year, about 30 families. And, this year, the session was nearly full to 40 families!

The opportunity to get together, meet other Rb families, have a great time, and learn about coping and thriving with life as an Rb family is priceless.

Thanks to all our new friends, and looking forward to new ones joining us next summer!

Wish boats: every camper makes a wish boat during the week, and at the end of the week there is a wish boat lighting ceremony.  Everyone lights a candle, floats the little boat onto the lake, and makes a wish! Such a moving ceremony!

A beautiful walk at Camp Sunshine

All of the kids have assigned volunteers/counselors who play, hang out, and attend to their every needs! It’s hard to pull the kids away from their volunteer at the end of each day!

To learn more about Camp Sunshine, please visit http://www.campsunshine.org

May 9-15 marks World Retinoblastoma Week, and like many Rb warriors, this is the big push to raise awareness about retinoblastoma.

If caught early, prognosis is excellent! The problem is that very few people catch is early due to lack of education about the warning signs and/or what Rb even is.

You can certainly read within RbNE to find out personal stories and information about parenting with Rb or cancer in general. However, I urge you to visit Daisy’s Eye Cancer Fund for a wealth of fantastic information!

I’m thrilled to say that educating people — especially ourselves — about retinoblastoma has been a very rewarding experience. For the past few years, my daughter (an Rb survivor) and I have been speaking on behalf of Camp Sunshine at different fundraisers to help raise awareness about retinoblastoma. In addition, we also speak at a number of cancer related classes (Biology of Cancer, Health Care classes, etc) and have reached more than 100 students on the topic of retinoblastoma. Thanks to Professors Sheila Barry and Craig Almeida, there is a picture of leukoria in their new textbook “Cancer: Basic Science and Clinical Aspects.”( Page 87).   I still have students and former students contact me whenever they see a picture with a white reflex. This past year, my brother gave his medical school graduation speech and mentioned leukoria and retinoblastoma. Hearing him say this to a room of future doctors brought me to tears.

Finally, this website has been helpful in raising awareness of retinoblastoma. Every few months, I hear from a parent who was researching a “white glow” in their child’s eye and they were led to this site. In most of those cases, the child did have retinoblastoma.

I recently brought my son in for his 1-year appointment. Our pediatrician had just retired, and we were meeting with his new pediatrician. The young doctor had just finished her training and was starting in this new practice. I made sure that I talked about retinoblastoma (she had never seen a case before — not uncommon, though). When she quickly peered into my son’s eyes with her opthalmoscope, I asked her to please turn off the lights and check again. (turning off the lights dilates the pupils for better access to the back of the retina). She said, “Oh, don’t worry, I saw the back of his retina.”

“I know. It’s because I know for a fact that he does not have retinoblastoma. However, if my daughter’s pediatrician had just taken the extra 3 seconds to turn off the lights when she was a baby, we might have avoided an enucleation and 6 months of post-surgical chemotherapy.”

To avoid inconveniencing her, I walked over to the light switch and let her know that I could be helpful and turn the lights off for her…. she looked a bit more carefully and moved on.

I can’t say with any confidence that she did this with any other baby after we left. But, simply knowing more about retinoblastoma was a small step.

So, learn more! Know more! Say more!

Happy Rb Awareness Week!