Monday, March 17, 2008

On Angel's Wings

Yes, I'll be first to admit thats a very corny title 'On Angel's Wings' but let me explain. On March 9th, we made our 16th trip to Houston in 15 months due to the protocol of the FTS drug trial requiring monthly visits and MRI's every 8 weeks. Yes, MRI's for NF2 every two months is insanity (!) but this is a new game we are playing. Never before has the option of trying a drug to halt NF2 been available and the rules will be made and re-made as we go. All I have to say is - game on! Enough of the cliches.

This mid-march trip was special in that we were flown to Houston 'free' by Angel Flight. What an experience! AF provides free air fare for medically compelling situations. With
MD Anderson being one of worlds most renowned cancer centers, it was pretty easy getting approved and flights set up. Flights? Yeah, they use small private planes with pilots who volunteer their time and expense. (And you think filling up your car is expensive!) Anyway it was 3 flights each way (normally would fly Southwest, barely a 2 hour jaunt across the gulf). We met our first pilot, Hall Robertson, at a small private terminal in St. Pete. It was so relaxing parking your car oh 50 feet from entrance (cost nothing ) carrying in baggage and being greeted with smiles and fresh coffee instead of long lines and grumpy TSA employees, then walking to the plane just a few steps out the door. There was no long lines, no shoe's off, evil-eyeing-you security or walking through metal detectors. However we did have to board by climbing in on the wing :) This was difficult for me but improved my technique with each plane change. So we board Hall's plane, it was comfortable with 4 seats total. It looked very lived-in, often used, much like my car!! I felt at home. And not at all nervous....until the engine sputtered to a stop when we were trying to take off. :) Again, it reminded me of a car, just turning over and over again. But cars stay on the ground ;) Hall was great, if a bit miffed his plane wasn't starting. He actually called for back up but didn't need it as the mechanics got it running and up we went. It was a beautiful take-off and smooth flight to our 2nd leg pilot Raul Romero. We boarded Raul's plane much like the first I immediatly noticed - wow this is the Cadillacs of small planes! Or seemed. It was sleek with leather interior seats and an amazing radar screen (probably much more than just radar!!) in the front. It was more snug that Hall's plane but a great flight to leg 3 - Baton Rouge. We met our 3rd pilot Fred (last name escapes me) about 4 hours since we left home and he had a 30 (if I recall correct) year old Cessna. It was beautiful!! It was maybe my favorite, had such character and very roomy inside. Fred like the others was exceptionally kind and friendly. I chose to sit in the back of each flight and Bill was delighted to get lessons in co-piloting up front - a hobby he attempted to take up years ago but could not go further due to hearing loss. The 3 flights home were much like the others with the pleasant surprise that AF had its own terminal at Hobby airport in Houston where we met a very helpful and caring woman and AF employee named Sharon. The flights were great fun with amazing views. I could seriously get used to that lifestyle.

The 3 days at MDA were mostly uneventful . MRI's (four) and bloodwork , and lots of time to kill. The Houston Rodeo and Livestock show was in town and we caught the Monday night show which was FUN and fully real-timed for the deaf. My appointment with Dr. Kurzrock didn't go exactly as hoped for though. It was decided to stop the drug (FTS) due to it not doing wh at we h ad hoped ie start regression. It's been a week and I'm still not sure if I'm disappointed or relieved! As much as I love Houston and the friendly-feel of MDA the monthly trips have become a bit draining on the wallet and time involved so a break is needed.

We will go back in May as Dr. K wants to see if I'm interested in trialing another drug. Which drug? Will let you know! According to her, new drugs that target our mutation emerge all the time. Just no one has thought to apply them to NF2 but only fast cancers. Well times they are a changin. Like I said before, this is the 1st time ever that the possibility of a drug rather than slash and/or burn has been an option. And it's not a widespread option either (2 doctor' s) which is why having Dr. Kurzrock on our side and her position as the head of clinical trials and targeted therapy at MDA is so important to all NF2 patients. Her knowledge and drive to CURE NF2 will hopefully come to be sooner than later. As for me, having to stop FTS is just a blip in the radar of the CURE NF2 mission I'm on.


Last but not least a big thank you to John Steele and MotorFund and friend Sharon Milian Mary Kay Consultant for additional help with travel expenses.

2 comments:

KC said...

Awesome update Cindy! Kudos to u for going thru all this travel and everything else involved with the drug trial! Sorry u had to stop the drug, but like u say, it is just a blip-on-the-radar. Great pictures! Keep on truckin' babe!
bark~!
~KC

Rebecca said...

This is great! Thanks for giving us an update! I appreciate you posting the results. Have a great holiday weekend!
Beck :o)