Travis in NF Presentations and Feeling Better

Travis continues to feel better with regards to his pulled muscle and is pretty much back to normal for his walking. Thank you for your continued prayers and support. He told his teacher this morning that he was ok in sitting in his regular seat.

This past weekend I attended the Children's Tumor Foundation's annual NF Forum, a family event where the kids gather while parents learn more about current NF research and understanding. Topics this year included learning disabilities, NF Registry, itching, what is known about alternative therapies in NF, muscle strength, clinical trials, etc. Travis (and the rest of us) were included in pictures from Racing4Research at this year's Rolex 24 Hours at Daytona. I was asked if it would be okay if a picture of Travis doing a strong man pose could be used at the beginning of the "Muscle and Physical Fitness in NF1" talk. I gave my permission (not a problem at all) and Travis was willing to have his picture taken as long as I got a picture of his picture at the NF Forum. ;) I heard many "Awwes" and "He's cute" when this slide appeared.  :) I texted this to Scott to show Travis, T thought it was pretty cool.

Travis' pic at the NF Forum

We know that Travis' issues with NF are in the 1/3 of patients with more severe manifestations, some pretty unique ones at that. I knew there would be a day when I would be sitting in a presentation at a conference/symposium/etc and would recognize the de-identified x-ray/image/MRI scan on the screen as Travis. This happened for the first time this weekend during one of the presentations. I have NO issue with the image being used since we allow pictures to be taken during appointments. I did a double take when I saw the de-identified image on the screen and recognized those legs from a few years ago.

I know those legs.

Travis' MRI is this Saturday morning, his 11th in Salt Lake City. As before, the MRI images will be sent off for volumetric analysis at the National Cancer Institute. I don't know if the Rapamycin has had enough time to load into his system to start seeing results or not. This will be another datapoint to help determine the overall trend in his plexiform growth in his pelvis (most of his left leg isn't included).