Unexpected News, Probable New Plan

Barnacles...that was the word I said at the end of Travis' routine rapamycin appointment today. The words running through my head are definitely NOT fit for print (or ears). Travis and I bid Scott's parents goodbye as we headed of to T's routine appointment and they to the airport. The blood draw went ehh (have had worse, have had better) as far as getting blood. T picked out a car as his "surprise" (as he calls it) and off to the cafeteria for the chocolate donut with rainbow sprinkles. Cute pics, then the update...one great pic after the update...

Noah watching T's "poke" (blood draw)

Chocolate donut with rainbow sprinkles!

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When Dr Viskochil came in to see Travis, the conversation very quickly went to the volumetric results of Travis' MRI from July. Travis' plexiform in his pelvis (the part that is usually measured) grew 19% from April-July. Barnacles! The current amount of pelvic tumor is almost 1000mL (1 liter). This was by far the biggest percentage increase we've ever seen since Travis started having MRIs every 3 months. Dr. Viskochil and I talked about the very real likelihood of changing protocol (medicine/treatment plan) after October's MRI. I don't think either of us expected this news.

Upon looking at Travis before taking measurements, Dr. Viskochil noticed an area of T's left thigh that is bigger than last month. T's been asking me to rub his left leg more and I've felt more bumpy areas than before. Some of T's "lumps and bumps" feel a little different than before, hard to describe in words. This enlarged area is above the 12cm above the knee that Dr. Viskochil usually measures. Barnacles!

Dr. Viskochil went over several different options for T based on what the October MRI shows. We don't have to decide now, but something to keep in mind. It looks like the plexiform is going through a growth phase and who's to say how the plexiform would have grown (faster, slower, no difference) if not on rapamycin. Each of the potential next step options brings a harsher drug with the potential for more and more-severe side effects. At some point we will probably bring in an Oncologist (to help with the medicine part, NOT saying cancer at this time). They have one they use in SLC that is very familiar with NF1. Some of the possible options are clinical trials based at the NIH (National Institutes of Health) and could be a while before making it to Utah. If I understood things right, T and I may only need to travel to DC twice as the monitoring could be done locally. Dr. Viskochil also thought adding in the docs at NIH as part of the medical team could be helpful as well.

Noah, Dr. Viskochil and Travis

For now the plan is to see the results of October's MRI (not scheduled yet) and decide from there. Thank you for the prayers and support.