Tuesday's Genetics Appointment with Dr. Viskochil

Another informative appointment with Travis' geneticist, Dr. Viskochil, on Tuesday.  Quick version of the new game plan...Dr. Viskochil ordered Travis' next MRI for mid-April (3 months after stopping the rapamycin).  All of Travis' MRIs will be sent to the National Cancer Institute for volumetric analysis like was done on the trial.  IF the plexiform/tumor progresses faster than when he was on the trial, Dr. Viskochil would recommend Travis be put back on rapamycin.  IF Travis goes back on the rapamycin, Dr. Viskochil would follow Travis per the drug trial protocol, monthly exams then every 3 months and MRIs every 12 weeks.  If the tumor progresses at the same rate as when Travis was on rapamycin, another MRI would be done in mid-July.  This would allow for a full 3 months without medicine in Travis' system.  Dr Viskochil would continue to see Travis in clinic every 3 months if Travis was not on the rapamycin.

Overall, Travis looks good and the tumor on T's left side still feels soft with no appreciable change.  We noticed during the exam that the "bulge" looks smaller when Travis is laying on his stomach and larger when he's standing.  This probably accounts for the visual difference when I returned from Texas since I saw T standing.  Travis hasn't grown since his January appointment, no surprise there.  Getting a height measurement for T is a little inexact anyway given we do each leg separately and T doesn't like to bear a lot of weight on his left leg.

Dr. Viskochil feels that IF Travis' plexiform were to start progressing faster again, rapamycin would be the medicine of choice for Travis.  At this time, Travis wouldn't qualify for current clinical trials and upcoming trials in the NF Consortium.  Given Travis' history with rapamycin, that would also be our best route for getting insurance approval for the use of the physician directed medicine. Dr. Viskochil will send a letter to insurance to get that process started so we are that far down the road IF needed.  Two other children have been taken off the trial here (Utah) due to plexiform progression.  One family is pursuing the rapamycin under the physician directed use and the other is not.

Dr. Viskochil also referred Travis to see Dr. Lor Randall, an orthopedic surgeon.  This is not a surprise since we were told the first time T saw Dr. Viskochil and Mike Pond back in October '10 that they want Travis to see Dr. Randall at some point in time...now's the time.  Dr. Randall does the plexiform debulking/removal surgeries here and debulking may be an option for Travis at some point in time (too much tumor in hip joint, causing larger issues in daily life, etc).  I know the orthopedic team at Shriners have talked with Dr. Randall about Travis before, this will be the first time Dr. Randall sees Travis. 

Travis loves his Shriners bike and he got to enjoy it for a few days earlier in the week and more nice days are in the forecast.  Physical Therapy went really great today with Travis getting up on tip toes without assistance.  The physical therapist and the brace maker worked together to make a minor adjustment to Travis' brace to allow Travis to feel some stability while maintaining flexibility.  T's adjusting well to the new setting. 

We are so grateful that God lead us to the medical teams we now have in place for Travis, they are amazing!  While this new direction is new to us, we have comfort knowing He continues to provide the path that is the best for us.