Thursday, June 21, 2012

NF Endurance hits Long Beach 2012!!

With summer promising late nights of freedom mingled with long hot days of sunburns and blue pools, I turn my attention toward my favorite event of the year…Serving as Team Captain for the mighty NF Endurance Team at The Long Beach Int’l Marathon on October 7th! This year I have a lot to run for…

Now the last year has been a bit complicated and heart-breaking for me. While the swelling that threatened my vision has completely subsided, it did leave a small amount of cognitive impairment behind. What that basically equates to I have a harder time processing and applying the information. So I take things a bit slower, and ask people to write more often. It is a blessing that the only permanent damage done is a completely manageable. I am ecstatic to say that as of today every single tumor I have had treated with Gamma Knife is shrinking. Was it easy? No. Were there side effects? Yes. Do I blame Gamma Knife or Dr. Duma? No, I blame the fact that I have NF2. I made the right decision for myself, and would make it again. Now I am moving forward with my new neuro-oncologist and will finally meet him this coming week. I am feeling great and getting into a groove, ready to hit Long Beach with everything I can…

As time marches on I find that my son JT now has his own little spot on these updates beyond telling you all that he is fabulous, hilarious, and crazy smart… I now have to keep those who are in our circle updated on his tumor progression. It breaks my heart in a million pieces, but I am a mother and a wife, so I do what any of us would do, what many of us do, what you would do… I put on a smile and do what I can. I take it a day at a time. *Deep Breath* By doing Delayed Contrast MRIs, the doctors at NIH are able to see which areas of the Hearing, Vestibular, and Facial nerves are absorbing more or less contrast, telling them where miniscule tumors have begun to develop before they are even visible or measurable. We were recently told that JT has small areas of developing tumors on every nerve in his IAC (Internal Auditory Canal.) Now, the doctors say that right now there is nothing we can do but twiddle our thumbs. I say to heck with that, we can RUN!

The Children’s Tumor Foundation is the largest private funder of NF research. “How?” you may ask? By funding clinical trials, targeting medications that already have FDA approval for other uses, by using a stringent review process for all grants given, by educating the NF community and supporting NF Clinics. In all of these ways I have personally and repeatedly been impressed by the Children’s Tumor Foundation. If we are to find a cure sooner, rather then later, then we all have to throw our weight behind the largest vehicle we have, and that would be CTF.

So you have read enough? Are you ready to get involved and do something positive? Get it! Follow these steps:

1) Sign up with the team at:

2) Register for the event at:

3) Show up and Kick Ass!

Questions? Comments? Want to volunteer? Email me:

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