Wow...Travis is approaching the end of rapamycin course 9. Really?!? He's been on this clinical trial for almost 9 months?!? Amazing how time flies. His mouth sore is looking better and he keeps sailing through this trial with few difficulties. Praise God!
We heard from MRI scheduling late Monday afternoon, Travis' MRI time on Thursday was changed from 8a to 9a. So, that threw a wrench in the plan to have the exam done while they were prepping T for his MRI. Dr. Viskochil would have been coming in early to see Travis before the doctor headed off to see other patients at another facility. Since Travis is on a drug trial, he has to have his MRIs, exams, and blood draws within a certain time frame for the end of courses.
I sent an email to the research coordinator that she saw Tuesday morning and she got in touch with Dr. Viskochil to see when he could see Travis. We heard at 6:30 Tuesday evening, that Dr. Viskochil could see him at 11a on Wednesday (the next day). OK, we'll be there. I'll have the older boys, but since we are not meeting him at the Oncology Clinic they can come and hang out in the playroom. Whew! Scott's in Seattle for a work trip and will be back Wednesday evening. I'm glad we are in SLC with all the schedule changes this time and not trying to have to scramble to leave Cheyenne earlier.
Travis' MRI will be Thursday morning and I'm not sure when we'll hear the local results since the geneticist will be out of town starting Thursday. Again, the volumetric analysis will provide us with the "official" results from the MRI and that analysis can take a few weeks. Travis has his 4 year well kid checkup with the pediatrician here (recommended by Dr. Viskochil) on Friday.
We heard from Shriners the end of last week and Travis' next appointment is Wed, Aug 3rd. He will get his cast off then, and hopefully not need another one. He's been taking more steps lately and even stood by himself unassisted for a little while.
We met several other families affected by NF on Facebook and we went to a get together at one of their houses Monday evening. Our kids are all around the same age, and all have various NF related issues. They are wonderful families and it's nice meeting people in the Salt Lake City area. We met some wonderful, lifelong friends in the Denver area when we lived in Cheyenne, but we lived a little too far for quick gatherings. All of our kids had a great time together and we look forward to when we can meet up again.
Sunday the 17th marked a year from when I first met Dr. Viskochil and was able to speak with him about Travis' issues. Who knew what kind of a year we would have? From something as simple as keep me posted and I'd be happy to see Travis for a 2nd opinion to he qualifies for this drug trial since his plexiform is growing at such a fast rate to our family moving to Salt Lake City.
Thank you for your prayers and thoughts for Travis and our family. I'm thankful we're not having to drive 450+ miles one-way for this round of exams and MRIs.
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