We're officially crazed... this has been an awesome day! We awoke to intense sunshine in a totally clear blue sky as we walked the beach for hours with our Riley observing frolicking dolphins leaping in and out of the waves as we let our minds wander....
The last two days have been intense. T's counts were once again too low to start the 3rd cycle of the Inotuzamab trial. This after being awakened by the smell of skunk on our beloved Riley at 1:30 am Thurs. and acknowledging that we were due at Stanford at 7:45 am. Luckily we keep the skunk cure ingredients in the laundry room so, as I stripped the bed and gathered Riley, T put the concoction together ( Dawn, baking soda, hydrogen peroxide and enough warm water to make a paste) and we all got into the shower and proceeded to coat our smelly boy. By the time we finally got into bed; we knew the next day was going to be a long one.... and so it was... we were told by Dr. Liedtke that we couldn't take a chance with the chemo as yet. T asked " how long until we can't proceed because the protocol won't allow it?" The answer: "2 weeks." So, I then asked if she were in our shoes, what she'd do? She took a deep breath and acknowledged that Penn would be her first choice. Problem? yes. Even if Penn were authorized by the FDA to take new patients; T would have to be in relapse and although his counts are very low and he's neutrapenic, his bone marrow is clear or at least the leukemia is not detectable. Unfortunately, at this time, Penn is not an option but bone marrow transplant is.
On Fri. after meeting the Listing Agent from "hell" for entry to do our inspections on David's San Jose short sale we proceeded to Stanford to meet with the Bone Marrow Transplant team= the BMT. Oh boy! First, the social worker who basically, couldn't answer any relevant questions and then, on to Dr. Rezvani who will lead the team. He answered our ?'s and explained to the best of his ability the demands of the procedure... and we are still reeling.... then, we met with the coordinator who tried to give us some timetables followed up by another blood draw specifically for the BMT and to
have T's PIC serviced.
We've been trying to digest it all and process what we can but I'll admit... I'm like a deer in head lights. We've committed to 24 hour care by me for the 90-110 day time frame, T shall be abstinent from alcohol and pot forever after and no food not prepared by me - no restaurants or take out during the BMT and we must be within a 30-40 min. ride to Stanford with no exposure to animal feces... how the hell do we do all that?
Needless to say... there's lots more to say but I'm overwhelmed. I NEED A VACATION!!! I think we'll take a ride sometime soon to parts unknown... just for a few days before this next odyssey starts... We're gonna need a lot of help and ideas please... we've got about 6 weeks before, hopefully, a donor is identified and then.... send white light please... we need your help