It's nice to see the sun out today, even though it's cold, and to have dry roads for traveling. Travis did really good with his appointment with Dr. Viskochil, Geneticist, on Monday. Travis has gotten taller over the past month, ~1 cm. Travis continues to do good taking the rapamycin, no mouth sores. Yea Travis! Dr. V took more measurements around his thighs, calves, abdomen, etc, the usual.
Some areas of concern or things to watch came up this month. Nothing too major, but something to follow. Travis' Triglycerides went up significantly this past month. While this is an indication that the medicine is working, it's still a concern if it remains high. We are to do another 3 day food diary to see if that could account for the change. Travis' recent growth could play a factor and his dosage was increased from the January visit. While this is noteworthy, the Geneticist felt that it is not worth having an additional blood draw done to get another triglyceride number. He'll check that when we do the next rapamycin level blood draw.
Blood work was done when they put in Travis' IV for the MRI sedation and we'll know at the end of the week if Travis remained in the target rapamycin range. If he's in range again, no blood draw until the end of course 4.
Dr. V also felt a spot/bump on T's neck that he hadn't before. Travis had a cold a little over 2 weeks ago and that could be a lymph node reaction or it could be a bump. Dr. Viskochil said that it's hard to tell the difference between the 2 in little kids, he'll follow it to see what happens.
A CD copy of Travis' MRI from Saturday has been sent out to the National Cancer Institute for their volumetric analysis. Those results could take up to 2 weeks based on the radiologist's schedule. That analysis will determine if Travis continues with the rapamycin trial or is taken off the trial.
We got another bottle of medicine, talked with the research coordinator briefly, and then started our journey back home. We had pretty good weather and decent roads for the first part of the trip back. We had a quick stop in Evanston and the snow started while we were stopped. The same thing happened in Rock Springs. At least the roads were warm and not too bad/icy/slick. As we got closer to Rawlins, we had a combination of wet, icy, slick in spots, slick, blowing snow, and dry roads.
A gas stop in Rawlins and back out on the roads. While the roads started out good, we knew the driving would be rough getting further east...and it did. The variable speed limit signs had the speed down to 35 and I don't think I would have wanted to go any faster on those roads. Basically, we had snow covered roads with a few patches of black ice from before Elk Mountain to the house. We saw where several people had gone off the roads, but thankfully it wasn't serious. I was able to find some truckers to go between...don't worry there was more than enough room between us...and drive along. I figured they had a better idea of the conditions and the one WAY behind me would be able to see me if I did go off the road. It took an extra 1.5 to 2 hours to get from Rawlins to the house.
Luckily, no one was close by on the drive up the summit east of Laramie. You couldn't tell where the lanes were anyway. For the most part, taking it slow made the roads drivable. The worst part was the snow that came off cars and trucks when they passed creating temporary white-out conditions. Thank you God for the safe travels and the prayers. We arrived safely home after 10 hours on the road, usually it takes just under 7 hours.
Unfortunately, the DVD player in the Suburban decided not to work on the way back home from Salt Lake City...it played the sound, but no picture. Thankfully my mom was able to help with Travis and he's such a good traveler. God knew the conditions I would be driving in on this trip and provided my mom the opportunity to come up for this trip across. Plus it was nice getting to visit along the route.
Thank you for your support, thoughts, and prayers. Travis is doing okay with his brace when he has to wear it. He doesn't like it when we put it on, but he wears it.
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