Tumor Progression

I talked with Dr. Viskochil Monday and the volumetric analysis from the National Cancer Institute indicated T's plexiform continues to progress/grow. (It's taken me a little while to wrap my mind around things.) Unfortunately the clinical trial that looked like it would begin in July 2013 is not going to occur in that time frame. The soonest a clinical trial may be ready for T's issues is at least 9 months. *sigh*  We decided to resume the rapamycin (same drug as with clinical trial) under physician directed compassion use (not currently approved by the FDA for this use), per insurance approval. The words compassion use are ones I never imagined I would have heard as we started this NF journey 5 years ago. While the words compassion use are not the easiest to hear, we take comfort knowing T is where he needs to be for his medical care.

The new game plan is yet to be formally determined. Fortunately we have a wonderful nurse case manager with our insurance that helps navigate the insurance waters. The next MRI should occur in January, we don't have a date yet. Things may/may not change depending on when Travis starts the rapamycin. We're in an area somewhere between research and clinical, or a combination of both. Travis has started having a little difficulty sleeping at night or finding a comfortable position to sleep. This doesn't occur every night, but a definite increase in the mentioning of pain when compared over the past several months.

T continues to make gains in physical therapy, endurance and functionally gets around good. He helped make and decorate Nolan's birthday cake and made sure I put "Happy 11th Birthday to Nolan" on the cake...he had to have the to on the cake.

This past Tuesday, Travis went on his first field trip and he was excited. His class and his 4th grade reading buddies class went to the Olive Garden, fun field trip to be a chaperone.  :)  His neuopsych testing showed areas where he will need extra help, but that's another post. So glad we were able to have that testing done.

God continues to provide for Travis and our family. We are fortunate to be able to move closer to his doctors as things like this come up. Several times this past week I felt like we've been down this road 2 years ago, the bonus this time is now we know how Travis' body reacts to the rapamycin and the side effects.