Today marked the end of Travis' first 4-week course back on Rapamycin. As before, Travis had a blood draw and followed by an exam with Dr. Viskochil. The person drawing Travis' blood this morning had a hard time of getting a vein and moved the needle around in T's hand quite a bit. Travis continues to be extremely brave and only quietly saying "ow, ow" while they were trying to find the vein. They drew blood for fasting triglycerides, CMP, CBC, and serum level (amount of Rapamycin in his blood). No results at the time of the exam.
The exam with Dr. Viskochil went pretty good. Overall Travis looks good and no significant exterior changes from a month ago. Dr. Viskochil showed me the areas where the tumor feels nodular and I felt the nodules compared to smoother areas under the skin. It's good for me to know how the tumor feels since a change could indicate the tumor turning cancerous, in addition to other changes at the same time, like pain that wakes him nightly. While this is not typically observed in children, there exists a possibility and it's good to know the warning signs.
Upon exam, Dr. Viskochil commented on Travis' bowed tibia and the reduction in muscle in Travis' left calf, the leg with the tumor. We are not completely surprised by the muscle change due to the brace that Travis wears, this can be one of the trade-offs when bracing. However, we know that Travis doesn't like to bear weight on his left leg and that can also have an effect on muscles.
Since today is a regular genetics clinic, Dr. Viskochil had Dr. Stevenson step in to take a quick look at T's left tibia. Dr. Stevenson is quite the NF and bone specialist and has a current research study looking at non-fractured tibial bowing. It had been 2 years since Dr. Stevenson last saw Travis in an exam setting, beginning exam for the clinical trial. Dr. Stevenson quickly noticed the change in bowing in Travis' tibia and felt some nodules from the part of the plexiform that runs in front of the tibia. There is a concern in NF patients with bone density. A research ultrasound will be performed on T's tibia's to detect bone density differences between his left and right tibia.
It was very interesting to be in the room as they were discussing Travis' NF issues and how best to approach things, in addition to the uniqueness of some of T's issues. We will be sending a copy of Travis' x-rays from Shriners to Dr. Viskochil and Dr. Stevenson, they do receive letters from Travis' orthopeadic team.
We also got orders for Travis' MRI for the end of course 3. Since Travis spends a longer amount of time in the MRI machine than most patients, the earlier we can schedule T's MRI, the better. Next MRI is Sat, Apr 27th the first thing in the morning, helps with the 12 hour fasting since blood is also drawn at the MRI time. Travis sees his orthopedic team at Shriners on May 1st and will more than likely have x-rays done.
We continue with life and see if the labs indicate if any adjustments need to be made. I appreciate how Dr. Viskochil thinks forward to the next step and what may need to be done. When Travis was in the clinical trial, someone else did the calculations to adjust dosing if needed...many parts working together to make the trial happen. Dr. Viskochil will get in touch with that individual as we may need to do some dosage adjustment at some point in time. You can tell how much Dr. V cares about his patients and their families, especially at today's appointment.
Much appreciation to all for all the kind words, thoughts, and prayers. Thank you for joining us on this journey. Ending on a fun note, Travis picked a chocolate donut with rainbow sprinkles. ;)
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