The last time that we were admitted for a fever, we spent almost 50 days in the hospital and Phoebe was sicker than she has ever been. It is so hard not to worry, but we are doing our best to focus on the hope that Phoebe will be out of the hospital soon.
We are taking things one day at a time, one step at a time, and always believing that eventually, we will get there.
The place that we are trying to get to, where Phoebe can receive a transplant, is now a bit further away. It is further because of this set back, but also because the protocol that we had hoped Phoebe could be treated with, has temporarily closed. This protocol is Phoebe's only option for transplant as it offers something different and has less intensive conditioning. It is expected to reopen in 8 weeks, which is a long time to wait, but we are hopeful that this delay has happened to give Phoebe more time to heal and when we get there, her little body will be stronger. She is not ready right now.
Last night Phoebe only wanted to play freeze dance. She was happy, playful, and full of energy. Just this morning, she was happy to tell everyone we met that she has now lost two teeth, proudly opening her mouth for them to see. She insisted on walking to the inpatient unit by herself. Now she wants only to sit on Jon's or my lap to sleep, rest, or watch her favourite movies on repeat. She is okay, but it is obvious that something is wrong and we are all too aware of how fragile and precarious this life we have is, and how quickly things can change.
We hope tomorrow is a better day. We have to believe that tomorrow will be a better day.
Thank-you for loving and caring for Phoebe and for following us on this journey. We read every comment and message and are strengthened by the hope that is shared and the prayers that are sent. We know that Phoebe is too.
Thank-you also to everyone who has purchased Phoebe's "Monkey Love" t-shirt. There is still time to order by visiting this link. Phoebe is very proud of "her shirt". Our family has also recently started a gofundme site for Phoebe and we are overwhelmed by the kindness and support we have received. Thank-you. We are blessed and so thankful to be able to fight this and stay together as a family in Memphis, as right now, the only place we could ever be is by Phoebe's side.