Denver Hope

We made it to Denver and are getting settled. The hospital is beautiful, bright and friendly and Phoebe's new doctor is kind and welcoming. She is also very understanding of this place we are in and we spoke quite a bit about quality of life while we are here - about how when you get to this place, the place of clinical trials and few and last options, there is so much uncertainty but also a great need to live life and make the most of it - this means keeping Phoebe out of the hospital as much as possible and doing what we can to make this easier for us and Phoebe. She mentioned road trips, exploring, and VIP access to the zoo. We plan to try to make the most of our time here so it was wonderful to see that this doctor recognizes the need for special moments on this journey. She also spoke of hope and this promising treatment - telling us that the other child currently enrolled is doing very well and in some adults, there have been complete remissions. 

Hope. 

Mae is excited to be here, she loves staying in hotels and meeting new people. Phoebe, on the other hand, is grumpy, moody, and upset, and although there are moments where we see joyful Phoebe, she is not herself. It is the steroids and we hope happy Phoebe comes back to us soon. We are starting to wean her off of these drugs today in preparation for the study.

Tomorrow Phoebe will have another bone marrow test, a lumbar puncture, and an EKG - these tests are all to determine if she qualifies for the study. If all goes well, we will start treatment on Monday, or possibly sooner if we can. 

Tonight, Phoebe ate her weight in guacamole and when she isn't shouting at us, she is laughing. Despite the steroids, she seems good. Her blood work today looked good. Her platelets are up which is a surprise but a good one that we will take. Miss Phoebe is full of surprises and she is clearly not done showing us the way just yet. 

We are thankful for all of the love being sent our way. I know I say this a lot but it truly does help us in so many ways. Thank-you for holding us up and helping us through.