T's NF Journey: Pictures and Next Steps Regarding Plexiform

Friday, September 7, 2012

Pictures and Next Steps Regarding Plexiform

Travis loves Kindergarten and attending the same school as Nolan and Barrett. Nolan and Barrett also enjoy seeing Travis around school. Travis goes to all day Kindergarten and comes home ready to rest for a little while. I remember N and B adjusting to the all day schedule for Kindergarten.

I spoke with Dr. Viskochil this (Thursday) afternoon regarding our decision to wait and see the results of Travis' MRI in October before proceeding with Rapamycin under compassion use or exploring other options. The data showed that Travis' plexiform increased at a faster rate from Apr-Jul when compared to Jan-Apr of this year. We will see if the Apr-Jul increase was a short-term faster rate of growth or the start of a faster growth pattern. Travis continues to make great strides and accomplishments and looked good at his appointment in August with Dr. Viskochil.

Another consideration that enters into the Travis care equation is that if we were to enroll Travis in another clinical drug trial, some trials stipulate the patients be off of medicine for a certain amount of time before starting another trial. This plays a role in making sure the new trial isn't being affected by residual medicine. While at times for me it feels like we're doing nothing, I remind myself actively observing isn't nothing. There are days where the inoperable component of his plexiform gets to me.

Thank you so much for the thoughts and prayers. This decision was different than the one we were faced with almost 2 years ago when Travis' plexiform was growing much faster than the current progression. We are thankful to be so close to T's medical professionals in Salt Lake City, they are all truly amazing.

Now for the pictures of the 1st day of Kindergarten, NF Walk, and Kruisers for Kids event (fundraiser for the Shriners bike program)...