Results from July's MRI Volumetric Analysis

Monday afternoon Dr. Viskochil called with the results of Travis' MRI volumetric analysis. Unfortunately T's plexiform continues to progress/grow. If Travis had a growth spurt between April and July, we (us and his medical team) are more inclined to wait and see what happens with the MRI in October. If T grew at his normal rate, no growth spurt, then we (us and his medical team) would need to consider medicine options for Travis.

Now comes the hard part, determining T's growth during that time period. The MRI department measures T's height to help determine the sedative dosing. Those height measurements are not determined to the nearest tenth of a centimeter as the research and clinical exams. I have measurements from T's appointments and sent the ones from this year to T's geneticist, T's docs are at different facilities.

If it turns out that the plexi/tumor grew and T didn't have a growth spurt (that's a big IF and AND combo), then we have several medicine routes to explore. Another clinical trial will be offered locally starting sometime next year and looks to be a combination of two medicines, one of which is what T was on before. T's doctor would also be willing to prescribe rapamycin as compassion use since T responded clinically. Our insurance would need to approve the compassion use of the drug since it is still considered experimental and that's not guaranteed. (Side note...if the data from the rapamycin trial shows it as effective, then that data would be sent to the FDA to try to get rapamycin approved to help slow plexiform progression, thus removing the experimental label. The trial is nearly complete collecting data.) Another option, Travis qualifies for a clinical trial being offered at another facility in the US. I looked up that clinical trial on the clinicaltrials.gov website and the medicine isn't as easy to take as the rapamycin plus other considerations.

Where we go from here...Travis now has an appointment with Dr. Viskochil on Tues, Aug 21st. We are also to note anything significant or changes over time. T does mention his back hurts more often now than ~6 months ago. This could be attributed to one of many different causes: walked a lot that day to the start of scoliosis to nothing.

Odds and ends...Travis started another round of swimming lessons this week and loves it. T rocked his eye exam last week! :) Travis starts Kindergarten in ~3 weeks and is looking forward to going to school. His walk continues to improve and he's getting pretty fast, he even tried the slide where Barrett has football practice.

Thank you for the continued prayers and support as we go into this next part of T's NF Journey. God continues to provide for Travis and our family even on the days we don't hear the medical news we would like to have heard.