5 Year Roller Coaster

While I love the fall and the lead into Christmas, this time of year brings many other emotions. It was about this time in November 5 years ago that I noticed a few brown spots on Travis' left leg and pelvic region. I remember talking with the pediatrician (not our regular) about this at T's 4 month well child checkup. My notes in Travis' notebook (we keep a medical notebook for all the kids, easy to look back on when they were sick, exams, etc) stated "most likely birthmarks". The pediatrician did mention the possibility of something more. Jump ahead 2 months my notes from T's 6 month visit stated "watching for NF1 problems, if any develop over time". What a journey Travis and our family has traveled the past 5 years.

Today we face the realization of an inoperable, extensive plexiform that continues to progress at a rate that causes concern, not alarm but still concerning. With the recent MRI report indicating that the plexiform now extends to the base of T's tibia, the plexiform comprises more than half his body length. Ugh!

For Travis' issues, there is no specific protocol to follow. There's no take this medicine and it will slow down, stop, shrink (wouldn't that be wonderful), etc his tumor. Surgery to remove the entire plexiform is not an option. Any surgery to debulk the plexiform brings more risk than benefit at this time. We look to research for guidance and realize that T participated in a clinical drug trial that is/was on the cutting edge of research. Thankfully there were others before us that has allowed research to be at the point where it is now.

He's functioning (and doing rather good) despite his issues. There are issues with Travis that could be fixed now in patients without NF; however, it's not that simple for T given his tumor, it's size and location. I appreciate the cautiousness of what the docs have learned over time in handling NF cases. They (docs) have more or less only 1 shot at fixing the bone issues they feel can be fixed. It is hard to watch the progression continue until it reaches a point where they feel the benefits outweigh the risks.

Two years ago today, Travis started taking Rapamycin as a participant in a clinical drug trial. We knew at that time that the Rapamycin more than likely wouldn't be the "miracle" answer; however, we felt that it could "tap the brakes" on the tumor growth thus resulting in less tumor volume.

Three years ago this December, the geneticist in Denver suspected a plexiform and that suspicion was confirmed by the MRI scans. That appointment with the geneticist came after an orthopedic appointment earlier in the morning where we learned that T's femur/hip structure was nearing the time of surgery (*hours before we found out about the plexiform).

There are days/time where it's hard knowing that no much can be done until things start going wrong, really, really wrong. Thankfully we have incredible teams taking care of Travis and keeping us informed of all (albeit limited) options.

Travis completed his neuropsychology testing and we'll have those results the week after Thanksgiving. From being in the room while the testing was being done, the known issues with Travis remained consistent for the neuropsychologist. She loved his personality and he had a great time with her. It will be nice to see the results/how he learns/how to effectively help him learn.

Thanks for reading and all your prayers, support, and thoughts for Travis and our family. We know God continues to look out and provide for T and our family.