Today marks 18 months since we traveled to Utah for Travis' 2nd opinion with Dr. Viskochil and Shriners. Who could have imagined the changes our family faced in the past year and a half?!? There's the qualifying for drug trial, signing up for the drug trial, blood draws, numerous trips to Salt Lake City, move to Salt Lake City, tibia and femur fracture, removal from the drug trial, 3 braces from Shriners, Shriners bike, etc. The time seems so quick, yet so long from that first trip. I could not have guessed one question to a doctor at a conference, "Can I talk to you about my son?", would have led to this. We are right where we need to be at this point in our lives, perfectly placed by Him. Sometimes the things that seem so small at the time are in fact the largest things.
March 30 passed as a day of reflection and thoughts for me, that was the end of the next 3 month course had T not been removed from the drug trial. T's new timeline isn't much different since his next MRI will be on Fri, Apr 13th. Dr. Viskochil will send T's MRIs to the National Cancer Institute for their volumetric analysis. The plexiform growth will be calculated and that number/percentage will dictate Dr Viskochil's recommendation regarding where we go from here. (If the plexi grows at the same rate as on the study medicine, another MRI in 3 months; if the plexi grows faster than on the study medicine, recommend back on Rapamycin.)
Unfortunately, Travis caught another cold the end of this week. He had a mild fever yesterday and congestion/cough. He doesn't seem too bothered by it all, but did take a break from playing yesterday to rest. Hoping this cold passes quickly and doesn't interfere with next Friday's MRI.
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