Gaining ground...

My mom received her second round of T cells on Friday. Her sister drove from Florida for her routine, biweekly visit and was pleasantly surprised to find out it was therapy time! When Deb walked into my mom’s room in ICU she started to mouth words to her and although we have no idea what she was trying to say but it was pretty damn exciting. My mom has not been able to speak to us for over 3 weeks and has not even tried for 2 weeks, so we were thrilled. Some days are easier than others and we need all the positive attitude we can muster. Because of her unyielding faith we have unofficially put Dana in charge of team moral. This has lead to matching T shirts that say TEAM BONNIE across the top with some boxing gloves stating BOOM BOOM POW, KNOCKING OUT PML! across the bottom. We cause quite a stir as we parade down the halls of HUP and people start cheering and giving us a thumbs up.

Our family continues to hope for the best and fear for my mom’s healthy homecoming when she kicks all of our asses for the measures we took to get her there! Dr Schuster has generously offered to be the first in line for a boot in the ass when mom is able to deliver. Dana laughed and told him that as my mom considers him God there is not much chance of him getting that size 7 in the backside but we appreciate the offer.

We have been experiencing some wonderful moments these days since the T cell therapy has begun. After the smiles we received that day after the initial therapy we have been seeing some great things from my mom. She has been moving her limbs on command and has been starting to move her mouth again. Her eyes are definitely focusing on each new visitor and she now turns her head if you speak from a different area of the room. These seem like pretty minor victories but if you saw the decline and knew what it felt like to think she wouldn’t make it the eleven days until the T cells were ready you would be celebrating along with us. Those were the worst moments of my life and I just hope we keep gaining ground from this point. Dr Schuster explained that there is one more treatment left before they perform a lumbar puncture to test for the level of the virus and after that they will monitor my mom for 72 hours before releasing her to the rehabilitation center of our choice. The idea of choosing a center is daunting after our experience with Good Sheppard but we have a better understanding of what we need. That experience, although horrifying, gave us the ability to trust our own instincts and not be afraid to expect the best when it comes to the care of our mom; there are places out there that can deliver.

My mom is now well enough to be released from ICU and we are now back on Rhoads 7. Dan is very happy with this development, in part because my mom is healthier but also because rooms in Rhoads have a cot and a shower for him to use! The waiting room on Rhoads is much more “user friendly” and is a few doors down from my mom’s new room. This lets us take turns sitting with my mom while others work, talk and watch TV. The only change from our previous visit to Rhoads is the need for protective gowns and gloves when entering my mom’s room. My mom is being treated for an infection in her bloodstream that has proven resistant to multiple antibiotics so the gowns are more for our protection than anything else. There is a huge bin of long-sleeve yellow hospital gowns and boxes of surgical gloves in all sizes outside my mom’s room. Each visit to my mom starts with a conversation yelled across the room as we suit up. Dana, our forever optimist, thinks it is quite entertaining and says it makes her feel like a doctor. I on the other hand could live without the static created by the removal of the gown. After each visit my clothes are clinging and my hair is standing up all over. Doctor—I don’t think so, more like Mr Hyde!