We don't have the chimerism results back yet, and we are holding on to hope that they might paint a brighter picture. This result actually makes sense when we consider the chimerism from 3 weeks ago.
It is devastating and we feel helpless. I don't know how many times I have written that, but lately it seems like it's every day. It is impossible to explain how this feels - how desperate and sad it feels to be here.
We met with Phoebe's doctor today and she has suggested two drugs. These are not new drugs - Phoebe has had them many times before, but she has never had them together. The doctors at St.Jude have found that when given together, they have a synergistic effect and have helped to put kids with mll+ leukemia in remission - for most it has been temporary, but we will take what we can get. You see, when there are so few things to choose from and no new drugs for pediatric cancer, smart doctors begin to combine things and search for solutions with what they have. We are incredibly thankful for these doctors who continue to try for our Phoebe and so many others. They have given us the most precious gift. Time.
Our options are very limited. We have tried many things and it has been almost a year since Phoebe has fully responded to any treatment. Each time something fails, she is considered more high risk. Refractory. Incurable. This is our reality. Even if a clinical trial were available, which it's not, the fungal infection makes Phoebe ineligible.
Phoebe is our leader and throughout this "journey" she has always led us with her bright smile and her feisty spirit. Right now she is tired and all of this is so hard on her. It is emotionally and physically exhausting. She is still feisty and bright, but she spends less time playing and running and more time sitting and just taking it all in.
Please keep our sweet Phoebe in your thoughts and prayers.