Phoebe is most definitely taking the long road. This road, we have discovered has many beautiful, magical and joyful moments, like today's and other consistent 100% chimerism results. But it also has many bumps, bruises, and difficult paths. Today was a day that exposed many of those things.
We are still working through graft versus host disease of Phoebe's skin and thankfully a skin biopsy has confirmed this so we are not treating something blindly. Her rash after 5 days of steroids is not much better, and the steroids are making her insatiably hungry, but the plan is to continue with this treatment. Good things and results come, as we have learned, to those who wait.
Today Phoebe's blood work showed that the liver enzymes that have been slowly climbing for weeks, jumped from 200 and 300 to 1200 and 1800. There was a note on the print out of the blood work that read "critically high". An ultrasound of Phoebe's liver was done and it appears normal, which is good news. Despite the rash, and the liver issues, Phoebe appears to be doing well and one of her doctors today commented on how good she looks. Only in the world of cancer and bone marrow transplants, can the previous state be called looking "good".
But, good she is and fine she looks. She is eating, drinking and even attempting to stand all by herself. She has been working hard on the downward dog and tonight she mastered it. She was very proud of herself and repeating something that sounded like stand, or "std" over and over as she worked on her new skill.
In regards to Phoebe's liver, the plan is to monitor it very closely and proactively treat everything and anything it could be. A biopsy of her liver will be done on Monday, this I think is to rule out gvhd although the doctors are not convinced that it is this. In the meantime, and because one of the concerns is that her liver issues may be related to a virus, they will be giving her a dose of immunoglobulins tomorrow. They have also started on another drug that we used in the past to treat veno-occlusive disease. They seem to have all of the bases covered and we are thankful but nervous and anxious to learn the true cause of all of this. To start to heal, and to put it behind us.
Today is day + 98, and Saturday will be the long awaited day 100. The day we never reached with Phoebe's first transplant. Despite these recent bumps, we will be rejoicing day 100 and the 100% chimerism that Phoebe is bringing to this day. We may be eating some cake, and there may even be wine. So, if the spirit moves you this Saturday, raise a glass to our sweet and feisty Phoebe. To her miraculous 100 days and to the many more wonderful days to come. Free from rashes and elevated liver enzymes and Leukemia.