Hello all - As mentioned in the thread below following a few days of R&R at the beach, another trip to San Francisco arriving last Monday, home Wednesday (night before last). The principle investigator/MD remains pleased with Madi's progress including the lack of any major side effects. Looking back to late December there was an alarming amount of fluid building up from the metastasis in her chest, so much so that a catheter was placed so she could drain it every four days. The clinical trial Madi's on is a "first-in-class small molecule EZH2 inhibitor", and appears highly effective in her rare case both shrinking watch-item tumors and all but eliminating the fluid build-up. Our lay interpretation... smaller tumors and they are infinitely less pissed-off! The doctor authorized the chest catheter to be removed which is already scheduled for May 8th, a very happy thing!
On Tuesday afternoon we lunched in a pool of food trucks permanently parked among all the high-rises in SF. The food options were surprisingly good and there are a couple of fire pits with swings... a rather nice way to spend a bit of time following all of the medical hoo-ha prior. Pictured is Madison trying desperately but failing to avoid the Paparazzi, but shows the two of the four double swings around the pit.
On Wednesday morning dad was working on his laptop in the community living room and the buildings fire alarm started blaring with an extremely loud PA announcement to evacuate the building immediately. Going back to the room to check in on Madison, she was on her hands and knees and looked up with a big smirk! In the excitement she littered the carpet with with a full bottle of meds (pills). The fire department came code 3 but it turned out to be a non-event.
Next steps: On Monday May 8 the catheter will be removed and on the 21st, another trip to UCSF for a more detailed exam which will include a CT scan.
Thanks for following along.... we'll post updates as things unfold!!
Next steps: On Monday May 8 the catheter will be removed and on the 21st, another trip to UCSF for a more detailed exam which will include a CT scan.
Thanks for following along.... we'll post updates as things unfold!!
