Next Step

We heard from the National Institutes of Health (NIH), lots of information coming quickly. Travis qualifies for the Peg-interferon clinical trial and his issues placed him on the high priority list for a clinical trial hopefully opening this summer. Even being on the high priority list for the next clinical trial, there would be no guarantee that Travis would get a slot since there are more people on the high priority list than potential openings. Many things taken into consideration, we decided to enroll Travis in the Peg-interferon clinical trial.

IF a slot becomes available on the next clinical trial for T and T is not responding to the Peg-interferon, we have the option to enroll Travis in the next clinical trial. We will know at the 4 month MRI if T's plexiform is responding to the Peg-interferon.

Travis' MRI scans from Tuesday were sent to NIH for evaluation for the right settings and good clarity, they were both. Now, we have 4 weeks from Tuesday (Feb 4th) to sign the consent for the Peg-interferon clinical trial, at the end of phase II. All MRI scans are to be done in Utah to keep consistency with the MRI machine, but that means we will have to cover those costs. Travis normally has MRI scans every 3 months, on this trial the scans will be every 4 months...a little further apart. If the scans from here weren't used, it would be a 6-8 week wait time to start the same trial as the NIH would need to find time for T to have a sedated MRI there. T's oncologist had similar happenings with a patient last year.

Travis and I will head to NIH later this month for his physical exams, labs, initial dosing, etc; the date is still to be determined. Travis' oncologist ordered labs for Travis here to make sure all looked good after stopping the rapamycin, she didn't want us to travel to NIH only to find out some labs were not yet normal. No fasting for this blood draw, so Friday afternoon Travis headed back to Primary's for a "poke"...yes, he got a donut. Travis' geneticist called Friday evening, I left a voicemail for him earlier in the afternoon, and he looked at T's labs while we spoke...all looked great. Travis' liver enzymes that were high while on rapamycin, returned to normal values. They will send the lab report to NIH since the oncologist will be out for vacation the next 2 weeks.

Due to the change in MRI location, we will see if there are options to help with the initial flight for T and I since the time is so close and prices are higher. We are starting to check out other options in case we have to pay for the flights, including miles donated to Southwest Airlines. Feel free to offer any info/insight.

Thank you for your thoughts and prayers. Things are moving quickly as we are getting set for T's 2nd clinical trial...not surprising and very reminiscent from 3 years ago when Travis started on rapamycin.