Happy New Year to all our family and loved ones.
Today threw us all for a loop.
Robbie and I got to the hospital this morning with the classic whole milk latte and cream currant scone, and spent the early morning catching up, planning my upcoming marathon, and getting his recommendations as to where we should hike, trail run, and explore here. I accidentally drank some of his whole milk latte instead of my black coffee (best mistake ever), and we talked about his easing into luxury over the last two weeks.
Andy and Mike arrived shortly after my dad, Robbie, and I took bathroom breaks (according to my dad, we’re all “defecate mates” – evidence that his wit remains in tact, I suppose). My dad cherished his time spent with Andy and Mike today. I heard stories of serious races and feats that happened pre-Mikaela/Hunter/Miles. It was one of the best parts of my day when I heard about how my dad, Mike, as well as the rest of the badass, up-for-anything crew members would travel in a van for these 100 mile relay races.
Andy, Mike, Robbie, and I spoke with Dr. Friedenberg (attending for the ICU) about my dad’s progress. The nature of his swelling is of serious concern to the ICU staff. The saline IV is required to keep his brain swelling at bay, which requires him to stay in the ICU. This delays the start of his chemo and radiation, and also prevents his OT, PT, and speech therapy. One of the neurologists came in to mention an options: surgery. According to him, it might be a good idea to take out more of the tumor, or to take out the skull flap so as to relieve some of the pressure. Unfortunately, this well-intentioned but oblivious doctor failed to read the notes regarding the nature of my dad’s surgery to remove the tumor: it was aggressive. Any more surgery of the brain tumor would be far too damaging for my dad for proper recovery. This conversation left me feeling incredibly frustrated, as it seemed that this doctor (who never met my dad before) was treating my dad as solely a swollen brain requiring treatment, not as a individual.
I spoke with Dr. Friedenberg later about this option, and she echoed the first doctor’s concern about the brain swelling. She showed me his CT scans, and pointed out the far-reaching nature of the residual tumor and the swelling. From the sound of it, some patients with GBM have long term swelling, that eventually abates. But they cannot do chemo or radiation with his current condition, as radiation causes further swelling, which leads to hemorrhage and potentially death.
So my dad must wait. We’re getting him moved back to Stanford ICU where we will be working with the team of doctors who have been with my dad since his diagnosis, and we will wait for the swelling to go down. My mom received a call from our primary neurologist (the man who performed the surgery) this evening, and he spoke of his concerns with regards to the swelling, but that the only possible option at the moment is to wait for improvement. While the tumors are aggressive, one month in the ICU is not the worst case scenario. Two months introduces a new slew of concerns, but that’s not the current reality.
Today was a scramble to get information. Santa Clara Valley Medical and Stanford Hospital are both ghost towns, and the doctors don’t appear to be communicating sufficiently between the two teams. This lack of communication leads to random doctors who don’t know my dad’s case proposing surgery that is entirely off the table for those doctors who know my dad’s case more personally. Furthermore, it seems as if everyone’s on vacation, and because of this my dad can’t receive any OT, PT, or speech therapy until Monday. Today is Wednesday, and he has already spent over four days in the ICU. For him to spend another five nights in the ICU without rehab simply because everyone’s on their holiday is incredibly frustrating.
I left the hospital today concerned and frustrated with this holiday. My mom took up the afternoon shift, and the two of us feel low from the news today. Hopefully we’ll get him back to Stanford ICU: closer to his team of doctors, and closer to home. The rest remains to be seen. At the moment, my spirits are low.
With continued thanks.