End Course 2 Exam and Orthopedic Surgeon Consult

Travis started this morning with a blood draw and the end of rapamycin course 2 exam with Dr. Viskochil. As usual, he was really brave during the blood draw and the phlebotomists (yes, 2 were in the room today to look for veins) spent quite a bit of time looking at his veins before the "poke". He picked out a small Mickey Mouse stuffed animal for his bravery. We headed to the cafeteria for donuts (he picked out chocolate with chocolate frosting and rainbow sprinkles) and then to see Dr. Viskochil.

T with his much deserved donut.

Travis seems to be doing really good upon exam and not much has changed. We discussed Travis' stomach pain and T pointed to where his stomach hurt, when it hurts. Dr. V stated the pains were in the epigastric region and he has seen other patients with similar pains. Scans, images, tests, etc were done with other patients and nothing was discovered. It could be acid reflux or nerve sensitivity or something else. We are to keep a log of when he mentions pain to see if we can correlate it to anything and T can have tums if needed. Of course if things change, this plan will change.

When T was laying down, it appeared that his "bulge" on the left hip appeared larger. Sometimes it looks bigger to me, but that may be that T is standing different/laying different/isn't wearing his lift/etc. There is not a definitive yes or no. You can place your hand over the tumor, almost like palming the tumor. When Dr. V went to measure T's thighs, T remembered that the measurements were taken 12 cm up from the knee cap (good to see T be able to recall info quickly).

The lab results were not available during the appointment and we will wait to see what this month brings. The good news is that with T's rapamycin level at 13 (in the target range of 10-15) and the increased triglycerides, the doctors feel the medicine is processing in T's system. Hopefully (and prayerfully) this translates to a slowing of the tumor growth rate. We learned that Rapamycin increases triglycerides in ~10% of the patients.

Travis saw Dr. Randall, the orthopaedic surgeon, this afternoon for his yearly check-up. While Travis mentions pain more often than a year ago, ibuprofen helps lessen the pain and the mentions average a few times a month. I don't think we spent more than 5 minutes with the doctor and that is fine by me for these visits. This means all continues good and that we don't see any need for any surgery on the tumor. May this be a doctor we see every year without having to use his surgical skills. We are to return in a year or earlier if needed. I like how this surgeon considers a parent sense of things changing (spidey-sense, mom intuition, etc) as reason enough to come in earlier.

For now we wait and pray for good lab results and enjoy Spring Break with Scott's mom in town. Thank you for joining us on this journey and praying for us.