Neurofibromatosis Cafe A place to talk, have fun and share.

A while back, we asked Facebook friends of Reggie Bibbs to submit any questions that they may have about neurofibromatosis. We then asked our favorite NF doctor, John M. Slopis, of M.D. Anderson Cancer Center to share some of the answers he had to your questions. The attached video is what he had to say.

Yesterday, my friend, Connie, picked up Shiner, Reggie’s beloved Golden Retriever, to take him to the vet. Shiner was scheduled to have two large fatty deposits removed from his face.

While prepping Shiner for surgery, the vet noticed that Shiner had a hard time breathing and shot an xray.

He found large tumors on Shiner’s lungs.

The vet told Connie that Shiner had possibly three weeks to live but the humane thing would be to relieve his suffering.

Reggie agreed and Shiner was put to sleep.

Connie sent me this email this morning:

Good morning Lou,

Thanks for taking Reggie out last night, I know it was a huge relief for him to get out of the house.

Everything went well yesterday considering, like you suggested Jaen and I took an ultimate cheeseburger to Shiner. As Jaen was unwrapping the burger I told him to break off little pieces. Just as the words were coming out of my mouth, Shiner grabbed the whole burger and swallowed it leaving only Jaen’s fingers and the top bun. The bun was swallowed whole next. It gave us a laugh and another thing to remember Shiner by.

The process was very peaceful, Shiner was amazing and I think he knew we were going to ease his discomfort. He was surrounded by love I stayed in front of his eyes soothing him and rubbing his nose. More than anything I wished that Shiner had more time and we could have removed the tumors. I just didn’t realize how bad off he was and Dr. Loudat commented on how much his health had declined over two weeks.

My only regret is that Reggie and his family didn’t get to say goodbye but maybe it’s something they couldn’t do and maybe it would have upset Shiner. I knew it could happen but I didn’t think when I took Shiner yesterday morning that it would be the last time Reggie would see him. He commented on how strange the house felt after I left since Shiner had always been there when he was. I know Reggie is strong and has endured more suffering than all of us combined but I do hope this lose isn’t too hard on him.

Shiner’s ashes should be ready in a few days. I’ll let you know when they come in, maybe we can do something special for Reggie and his family to honor Shiner.

I told Reggie when the time was right for him there will be another four legged friend that will need him.

Love,

Connie

Series investigating the extremes of discrimination. Each episode brings together two people often defined by the way they look – one has a facial disfigurement, the other an intense preoccupation with their appearance.

Twenty-one-year-old beautyholic and drama student Gary Thompson meets 47-year-old Reggie Bibbs from Houston, Texas.
Gary has spent up to £31,000 in the last five years on looking good. He wants to have a nose job and look like Kim Kardashian.

Reggie has one the world’s most extreme cases of neurofibromatosis, a condition where tumours grow all over the body.
Gary learns about Reggie’s past and how he spent 30 years hiding from other people.

Reggie sends Gary to watch a rhinoplasty operation and he sees a surgeon breaking a patient’s nose. He also meets Tammy, a former rhinoplasty patient whose operation went wrong and who now has no sense of smell as a result. Will Reggie persuade Gary not to have a nose job?

Featuring: Reggie Bibbs and Gary Thompson

This video was produced by Betty TV in London, England for Channel 4 featuring Reggie Bibbs, founder and Director of the Just Ask Foundation, a 501(c)(3) not for profit organization. By posting this video on VIMEO, Reggie Bibbs, the Just Ask Foundation and its Directors are not receiving payment or any monetary or financial gain by airing this video. Copyright remains with Betty Productiona and Channel 4 TV in London, England.

Cindy Gonzalez Hahn, you rock!!!!

What a blast Camp for All was this past weekend!!! Kudos to Cindy Hahn and the entire staff and Board of Directors of Texas NF for hosting such an important and extremely necessary event to help bring NF’ers and their families together to share in an atmosphere of fun, education and fellowship.

For 20 years, the Texas NF Foundation has been putting on these camps for the benefit of all who are challenged by neurofibromatosis and I think it would be wonderful for everyone who has benefited from these camps to express their thanks to all involved!

I’m sure an email to Cindy Hahn at The Texas NF Foundation would be very much appreciated!

See photos at:
http://www.flickr.com/photos/reggiebibbs/sets/72157627526387189/