Travis saw Dr. Viskochil this morning for the end of Rapamycin course 3 exam. Lab and MRI reports were in and there was quite a bit to go over. Travis' rapamycin level dropped to 8.2 this round, below the 10-15 range. That combined with lower triglyceride level at 88 (there is a correlation between rapamycin level and triglyceride level), prompted the increase in Travis' rapamycin dose to 1.9mL twice a day. Travis' vitamin D level was good and the food diary looked pretty good, especially considering it was over Easter weekend. The only change to Travis' diet is to try and get more protein into T's diet, the nutritionist recommended gogurt.
As for Saturday's MRI...the left femur shows "abnormal high signal intensity in the distal femoral metaphysis bone marrow". (This is the region where the femur flares out to the knee.) The radiologist looked back over the past year's MRI images and stated this finding "has become progressively more prominent over the most recent previous studies".
I'm not sure what this means, but here's what I know. Dr. Viskochil wants Travis to have x-rays done of T's femur at Friday's appointment at Shriners; otherwise, Dr. V would have had the x-rays done at Primary's today. Dr. Viskochil ordered a copy of Travis' MRI for me to take to Shriners on Friday. Dr. Viskochil wants to follow up with Dr. Lor Randall (the orthopedic surgeon that will debulk T's tumor if needed), this is the same doc Travis saw back on April 2nd. My prayers are that this will turn out to be much ado about nothing.
I received a printout of Travis' MRI report and glanced over them while waiting for the CD copy of the MRI. The pelvis report mentioned the possibility of a "smaller plexiform neurofibroma on the right side". Well...pretty much any plexiform Travis has now will be smaller than the large one on the left. ;) There is bright signal on the MRI images and something can be seen in that area looking back at T's first MRI. Will follow up on this, but really doesn't change anything with what we're doing at the moment.
Some funny moments in today's visit. Genetics takes pictures of Travis' leg, back, etc each visit to photo document Travis' NF issues. Dr. V set the camera down so he could measure the circumference of Travis' thighs. Travis picked up the camera, turned it on and started taking pictures of Dr. V and T's leg while Dr. V was getting measurements. Way too funny. What a sight that had to be for the individual that takes the pictures off the camera. This lead to a great idea to let Travis take a camera to take pics at his appointments.
I called the GI department to schedule T's regular appointment earlier this month. Due to a full schedule, Travis was put on the cancellation list. Travis has had some GI concerns over the past month and some showed up on MRI. God's timing through all this continues to amaze me, you think I'd be used to this by now. Last Thursday I received a call from Shriners to reschedule Travis' orthopedic appointment from Wed, May 1st at 8a to the morning of Fri, May 3rd. I received a call from GI mid-day, they had a cancellation for tomorrow (May 1st) at 8:15a. Amazing how that works out.
Thank you for keeping Travis and our family in your thoughts and prayers. I'm praying this turns out to be nothing or something with a simple solution.
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