September Rapamycin Appointment

The past month flew by pretty fast, today Travis saw Dr. Viskochil for T's routine rapamycin appointment. The blood draw was one of the smoothest that Travis has ever had done, the lab guy hit the vein the first time and didn't even need to move the needle. As always, another brave blood draw for T. T dug through the cars prize bin after the blood draw and passed up several Ferraris in hopes of finding a Porsche 911, he found one (see pic below). Off to the cafeteria for a donut (with sprinkles) then appointment time. One of the MRI techs we've gotten to know through all T's MRIs spotted us in the cafeteria and stopped by to say "Hi" to Travis and see how he was doing. He influences so many people in so many different ways.

T's donut this time

For whatever reason, Travis' height wasn't easy to determine when compared to last month's values. We tried standing and laying down and got inconsistent measurements. Even Dr. Viskochil rechecked the values with T laying down and got numbers that would indicate T grew quite a bit in the past month...almost 2 inches. None of us have real confidence in the measurements, and we even did the standing one several times.

The circumference around T's left (tumor) thigh were off the first time measured, good thing Dr V re-checked that as well since the subsequent measurements indicate a more reasonable value. You could feel the mood of the room change while we were determining if the first thigh measurements were correct (the first and second measurements were significantly higher than August's). That could have suggested rapid tumor growth, but several re-checks later determined the actual thigh circumference more in line with what we visibly see (NO significant change from August).

The past month T has wanted me to rub the base of his neck / upper back more both at night and during the day. Even with the plexiform, I'm not sure of my skills of feeling for tumors. Dr. Viskochil felt around T's neck and nothing indicated a tumor. He had T lean forward while sitting and T's back may be starting to curve (scoliosis) and that could explain the pain. He asked when T has x-rays again at Shriners (Nov) and didn't say that T needed to be seen sooner (he has done that for other issues). The curve on T's back while sitting could also be related to the differences between T's bum cheek sizes. We're to watch and see. Scoliosis can occur in NF patients, I don't know if I'm ready to hear that T has scoliosis.

The Porsche 911 T picked

The labs that were ready looked good and Dr. Viskochil calls if the others are of concern. T looks good and he was his usual smiling self during the appointment, even showing Dr. Viskochil the "Driver Change" commercial for Dempsey Racing (includes Racing4Research driver Patrick Long). No word on the volumetric analysis, we're about halfway between MRIs. Thank you for the continued prayers, thoughts, and support.