A Year on the Drug Trial

A year ago today (Nov 10th) Travis and I made the trip from Cheyenne to Salt Lake City to enroll Travis in the rapamycin clinical drug trial. I remember it being very surreal signing the consent forms.  Reflecting back...Travis had a blood draw the morning of the 11th to make sure all his levels looked good before starting the medicine and to have a baseline if/when values changed.  Around midday we met with 2 geneticists (his main one was out of the country) for the initial exam and then to the research coordinator's office to wait for the final approval for the trial.  Thank you God for directing our path to these wonderful medical professionals You have made.  Thank you God for placing Carol in SLC during that time and us being able to see a friendly, familiar face after such an emotional day.  You know our needs and You provide.

Here we sit, approaching a year after starting the trial at the end of the 13th 4-week course.  Wow...what a year it has been!  Travis' plexiform now grows at a reasonable rate and he's had only minimal side effects.  While it took a while to reach the right dosage, I'm thankful for the incremental increases to carefully approach the desired dose without giving too much medicine.

Friday (11/11/11) Travis has his blood draw for the end of course 13.  This is a regular blood draw and if his level is good, it will be another 4 weeks before the next blood draw.  Starting next week, Travis will see a new medical professional each week for 3 weeks.  He has a physical therapy evaluation at Shriners on the 14th, neurologist appointment on the 22nd, and GI appointment on the 30th.  Travis has a urology appointment on Dec 21st, but that may be moved up if the urologist wants to see Travis sooner after talking with T's pediatrician.  Travis saw his pediatrician on Monday to get his assistance and thoughts on the 2 separate urological items.  He feels one is a non-issue and the other could have an explanation from very simple and easy to very complicated.  We're praying for the simple route.

Travis had a speech evaluation at Pre-K recently.  The speech pathologist noticed that T has some items that is noticed in people with NF.  The way I understand it is that it is more of an observation than an issue.  If we wanted to pursue this, she recommended a clinic at the University of Utah.  Turns out that the head of the clinic has a kid on Nolan's rec and select hockey teams and we got to know them pretty good this past week with all the hockey games (before we knew their jobs).  :)  God continually provides and I find myself in awe each time.  While we seem to be in a point where there are many more questions than answers, He has put us in contact with the best medical professionals.

Thank you everyone for your prayers, thoughts, and support for Travis and the family over the past year as he's been on this journey.