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

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

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/

Dear NF friends,

For the past several years researchers have suspected that there is a higher risk for breast cancer in individuals with NF1.  This research has now come to Michigan.  Dr. Xia Wang at Henry Ford Hospital is working on a grant from the Department of Defence to study breast cancer in NF1.

If you or a family member with NF1 has had breast cancer, regardless of how long ago, please consider contacting Dr. Wang to help her gather data.  Simply email her at xwang1@hfhs.org.  She’ll send you all the information you need to decide whether you wish to participate.

You may also contact Dr. Wang by phone:

Xia Wang MD, PhD, FACMG
Department of Medical Genetics
Henry Ford Health System
3031 W. Grand Blvd., Ste. 700
Detroit, MI 48202

Tel    (313) 916-3188
Fax   (313) 916-1730

Warm regards,

Rosemary

Rosemary Anderson
President
NF, Inc. Michigan
NF Support Group of West Michigan
nfwestmich@aol.com
616-451-3699

“Race the Lake for NF Research 10K”

Saturday, August 6 · 9:00am – 12:00pm

Pillar Point, New York, 23169 Kitto Marina Drive, Pillar Point, NY

Please join us for the 10th annual Race the Lake for Research 10K to fight neurofibromatosis! The race begins and ends at our family marina: Kitto’s marina in beautiful Pillar Point (just outside of Dexter, NY).

The 10K is a nice loop that finishes along the lake. Afterward, relax and enjoy the marina festivities: a pancake breakfast (made to order!), swimming, and relishing in the fact that you made a difference + had a great time-all before NOON!!!!
For more information you can e-mail me @:nfracer@twcny.rr.com
info: 315-639-6043, Diantha Kitto Velasquez.

For more info, click here!