Never straightforward

Sawyer had his monthly appointment yesterday in Rochester. It was a beautiful day to drive up, traffic was good, construction not bad (but I can imagine the relief of the thousands of hospital workers once the construction around the three sides of the hospital is done!).

The spinal tap went smoothly and we were hoping to be heading home about noon, but neither of his ports were cooperating after the procedure (they need to give blood return in order to have any medicine injected -- it lets the nurses know there's no leaks since they don't want the medicine to get out of the vessel and damage any tissue). Both sides of the port were accessed at the beginning; one gave a blood return, the other didn't. They used the one that did to give him the propyphol to knock him out for the procedure; but when it came time to give the vincristine injection the port no longer gave any blood back in the tube. They tried everything: sit up, lay down, arm up, arm down, breathe in, breathe out, nothing worked. This has happened in the past but usually one of those actions gets things moving again.

They decided to flush out the port with a liquid called altaplase - it needs to sit in the line for awhile, kind of like Drain-O. We watched "American Pickers" on TV while waiting (pretty good show!); the port was still being ornery when they tried it but it gave a slight bit of blood, enough to inject the vincristine but not enough to draw blood for lab work. So, he got poked in the arm for that and we were able to head home shortly after 2 pm.

So nothing major, just the frustration of being poked a couple extra times and not being able to leave when expected. His next appointment will just be getting the vincristine, if all goes well we should be in and out within an hour (hopefully I didn't just jinx that appointment!).

Next Saturday we'll be participating in a 7 mile hike sponsored by Alfred University. It's a beautiful walk starting at the University's equestrian center and ending at Pollywogg Holler (an eco-resort with wood-fired pizza). It will be a restorative walk: Sawyer did it last year just a week and a half before he was diagnosed, so he had been sluggish and not feeling great but found the energy to walk 7 miles! This year he will be much more perky and healthy!

Sunday will be another painting session for his Eagle Scout project. Most of the painting was done last Sunday but there's some trim work, higher boards and a few places that will need a second coat. He has a fantastic cadre of volunteers, scouts and a non-scouts, helping out.