Travis Carpenter was diagnosed with NF1 at 6 months. At 18 months old, Travis’ leg length discrepancy appeared – his left leg longer than his right leg – which significantly increased from 1.5 cm to 4 cm over the next 9 months. Travis started walking with a bowed femur, abnormal left hip structure (left hip bones larger than right), thin left femur, knock-kneed on the left side, and bowed left tibia. Two weeks later, an MRI confirmed an enormous, encompassing plexiform neurofibroma that extended over 50% of Travis’ body length.
Years of visiting different specialists and trying different treatments did not yield the progress Travis’ parents and doctors were looking for. Read more about that part of the journey here. However, things started to turn around in November 2015, when Travis enrolled in the MEK-inhibitor AZD6244 (Selumetinib) clinical trial at the NIH.
While not yet a cure, Travis’ life has improved with enhanced mobility and better health. We asked Kelly, Travis’ mom, to tell us more about Travis’ progress and how it has impacted his life at the young age of 10.
Travis enrolled in the MEK-inhibitor Selumetinib (AZD6244), his 3rd clinical trial, a little more than 2 years ago. Little did we know the positive influence this clinical trial would have across many areas of his life. For the first time in Travis’ life, we observed tumor shrinkage, both visually and on the MRI, since starting Selumetinib.
Imagine lugging around a tumor in your back, hip, and left leg when you are barely 8 years old. The part of the tumor measured for the start of the clinical trial (not all of the tumor) occupied almost as much space as a 2 liter bottle. Now, 2 years later, the official report reads a nearly 35% decrease in tumor volume!!! This allows more freedom, more mobility, and less energy to “lug” the tumor around in daily functioning.
Travis enjoys this change in his functionality and endurance, in addition to a significant decrease in tumor pain. We notice Travis choosing his walker over his powerchair more and more in his daily life, especially at school. For the first time in his life, the principal at Travis’ school caught him “running” down the hall using his walker. We all quietly celebrated this moment, including the principal, as it outwardly indicated the improvement he feels on the inside.
This winter Travis begins his second season of downhill skiing with the National Ability Center. Considering how he externally demonstrated how he felt inwardly before this clinical trial, we never knew if he felt like taking up adaptive skiing. With the guidance of his amazing volunteer, Travis quickly learned the art of skiing using a sit ski. With his drive, and competitive edge, Travis asks us to help him with activities to strengthen his core to allow him to ski better to enable him to fly down the hill. In less than 2 months, Travis braved one of the thrilling ski runs and began completing runs without the assistance from his volunteer. They already made big plans for the upcoming season.
Travis also loves to play Miracle League baseball, wheelchair basketball, wheelchair tennis, and recently added adaptive archery. His coaches also notice an increase of endurance and competitiveness as he feels better. Travis participated in 2 weeks of day-long wheelchair sports camp this past summer. He even chose to walk around a high-elevation lake instead of being assisted by camp staff. These activities bring smiles to our faces as we notice Travis actively participating more often.
Travis continues to work his hardest in school and his teachers notice the effort he puts into his work. His schoolmates comment how well he moves around. When 10 year old kids comment on improvement, you know it’s big. Before the clinical trial, pain brought Travis to the office nearly every day for medicine or fatigue. Now, Travis’ infrequent appearances in the school office relate to fun activities and rarely for pain related issues.
We notice Travis maneuvering around the house with less difficulty. While a seemingly small achievement for so many, Travis new-found strength allows him to stand on his tiptoes unassisted. With all the improvements and gains in Travis’ life and world, Travis continues to add activities into his life…all of this with a dislocated left hip. Travis defines UNlimited!!!
In 2008, the Children’s Tumor Foundation made a significant investment in the NF Preclinical Consortium.The groundbreaking research conducted by that consortium of scientists demonstrated that MEK inhibitors have significant impact on tumor size in animal models.That research now informs the clinical trials taking place today at the NIH, and the incredible results. Travis joins Philip Moss, Jane Constable and a number of other NF patients reaping the benefits of progress not ever seen before.
