NIH Appointment - End of Peg-Interferon Clinical Trial

Travis and I made a quick trip to the National Institutes of Health (NIH) this week for his final Peg-Interferon appointment (results at the bottom, cute pics for the scroll down and at the end). We left Wednesday morning and returned Thursday evening, probably spending 1/3 of our time away on a plane. Great he travels well. Several of the Delta agents recognized him from the Santa Express Flight in December and loaded him up with a bag of goodies when we boarded the airplane.

Travis and Winter

T's goodies from a Delta agent

T enjoyed watching "Big Hero 6" on the flight and dare I say the 4 hour flights are starting to pass quickly. T worked on homework while we waited for the shuttle to the NIH. We arrived at The Children's Inn in time for dinner and movie night. (That same night Barrett's hockey team prepared dinner for those staying at the Ronald McDonald House Intermountain Region. Ironic to have our family be a patient and meal provider on the same night.) T played in the playroom, including racing cars on their cool rug.

Travis working on homework

We arrived at the Peds Clinic in the Clinical Center at 8:30a for labwork and appointments. He knows the routine of these appointments and enjoys every opportunity to play Mario Kart on their game system. During Travis' vital signs a nurse came over and started asking T how fast he was traveling in his power chair. The nurse then grabbed a stack of post it notes and said he was giving T a ticket for speeding. :)  The nurse even caught the staff off-guard with his plan...way too funny. Check out T's smile below.

T receiving a "speeding" ticket

Shortly after labs, T's exam with Andrea started. I'm not sure who has more fun during those. Travis looked great upon a basic exam and T headed to the waiting room to play more Mario Kart while Andrea and I talked. We discussed T's time on Peg, how he tolerated the medicine, and the medical appointments and plans for Travis in the coming year, including T's left side weakness in his upper body. Several of my questions for the NIH team revolved around the volumetric assessments, the new area used for the analysis since the plate casts a shadow on the MRI images, and other questions to best answered by those directly in that area. Andrea emailed my questions right away so we could have answers before we left.

Exam fun with Andrea

When we returned to the waiting room to get T back for a neurological exam due to left side weakness, we saw Emilee Tominovich (one of the drivers with Compass360 Racing we saw in Daytona and Utah) and Travis racing. When she learned at Daytona that T sees doctors at the NIH, she immediately offered to come see us when we were there. That is truly amazing! What a great person and driver. Emilee even brought donuts so she and Travis could celebrate with donuts (T ate 3) together. Wow...

Andrea noticed the weakness on T's left side during her exam, you can visibly see something is different on that side during the exam. They will look at the MRI images from December to see if they provide answers. T may end up having a dedicated MRI of the brachial plexus to see if there is a tumor, compression, enlargement...answer. Back to the waiting room for more Mario Kart (and donuts).

Emilee and Travis celebrating the end of the Peg-interferon clinical trial

Serious racing action

Results...
I met with Dr. Widemann, Andrea, and Anne a little while later to discuss the results of Peg-interferon for Travis. Travis plexiform grew ~10% during the year on Peg-interferon, the NIH calls this stable. Before this clinical trial, T's tumor progressed/grew anywhere from 20% a year to 40% in 6 months. We are interested to see how T's tumor responds to being off Peg-interferon and he will have another MRI in ~ 4 months. That will provide even more information into T's tumor growth. While the hope on Peg-interferon was for shrinkage or stoppage, we will take any slow down in growth. Travis' labwork looked good and that always brings relief. This has been a hard year both emotionally and physically, I'm glad it's completed with some benefit. Words cannot express our appreciation for all the prayers, good thoughts, support for Travis and our family on shot days and throughout this clinical trial. I felt the power of prayer and the hand of God many times throughout this year.

Hopefully in May the NIH will begin enrolling patients for the Phase II MEK inhibitor clinical trial. The Phase I trial of the same drug showed 60% of the patients had shrinkage of 20% or more. We discussed side effects they see with the MEK inhibitor and the extra testing done on the patients (including EKG and heart echo). Travis remains in their high priority group, not a 100% guarantee he will be enrolled in the trial. We also discussed some of the logistics of the clinical trial as T would return to the NIH 5 times the first year, including the enrollment trip. They would do the MRIs at the NIH in addition to the extra tests, so most trips would be longer than our 36 hour trip this week.

In watching a show with our oldest, a character commented that you turn to clinical trials when there are no more options. That hit home for us as there are no effective treatments for NF and T's tumor is classified as inoperable, extensive, infiltrative. We turn our hopes to clinical trials so that maybe, just maybe something would help. We hope that will be the case for T and MEK.

During the shuttle ride back to the airport the exhaustion of playing Mario Kart caught up with T, he quickly fell asleep. Luckily our no-significant-weather-delay streak continued and we left a cold Baltimore airport for a balmy Salt Lake City.

T sleeping on the shuttle ride to the airport

So for now, no shots...no medical trips...a needed break before T's "8" plate surgery at Shriners this summer. Travis sees the ortho team at Shriners near the end of April for a follow-up and to set surgery date. Travis plays in his first wheelchair basketball game on Sat, Feb 21st. He asks each week how long until Miracle League baseball season begins and even practiced hitting the ball during the nice days earlier this month. He enjoys being able to participate in sports like his older brothers.

The NIH team loved seeing how well Travis gets around and he continues to impress many with his spirit, bravery, outlook, etc. He is enjoying life and it shows. The combination of the "Florida high", accupressure massage, possibly less pain with Peg-interferon, works. I love seeing this smile return more often.

Never stop racing