Our flights are booked. We leave for Denver and the Children's Hospital of Colorado on Monday. We are relieved but also very anxious. We are up against incredible odds and we have a lot of hope resting in this treatment.
Yesterday was a difficult day. Phoebe had surgery to have a central line inserted. This is a line that comes out of her chest, is where all of her medicines are given and where her blood will be taken for blood work. We now avoid pokes which is nice, but it is a line that comes out of her chest ... so as you can imagine, not ideal. The clinical trial drug is a 28 day infusion that runs 24 hours a day. We hope that for most of this time, Phoebe will be able to go about her life with the medication running through a portable pump and in a backpack, but it will still be running 24 hours a day, so needs to be given through a central line.
Phoebe now realizes that things are not as they should be and she is frustrated. Yesterday while we were waiting to go to surgery, she asked to go home, she screamed, shouted, told everyone she could to go away. We have tried to explain what is happening and what to expect and each time she tells us very clearly that she doesn't want to talk about tubies and medicine anymore. She has had enough and it is heartbreaking to think of the road that lies ahead. We are also trying to prepare Mae for this road. Little Mae who is so resilient and from whom we ask so much. Sometimes it seems that she has the weight of the world on her shoulders with this life. I wish I could make all of this better.
We are being forced to face this reality. Phoebe's blood work looks a bit worse each day - her platelets are low and because she was having surgery yesterday, she needed a platelet transfusion, this was a first in over two years. She is now neutropenic, which means she has no immune system, also a first in over a year. The idea of traveling with a weak immune system is terrifying, but we don't really have a choice. Our appointments in Denver start Tuesday.
So, off we go. We are grateful to have this chance. We have heard from the doctor running the trial and she is kind and welcoming and truly just lovely. We know Phoebe will be in good hands. We know that this treatment is promising. We just need it to work. We believe it will. There is no other way.
Phoebe is feisty, but it is clear that this disease is taking a toll on her little body. She still has many moments where it is easy to forget that she is so sick and it is in these moments, where she doesn't let anything slow her down, that our hope lives. I watch her and marvel at all she is able to do despite all that she is up against. Moments like tonight, when she ran up and down the street with Mae in search of a poor little cat that wanted nothing to do with them. Or yesterday, shortly after she got home from her surgery, when all she wanted was to jump on the trampoline. Or this morning, when she woke me up bright and early, demanding her breakfast and jumping on the bed. She is my hero.
Thank-you all for reading and sharing this story, for praying for Phoebe and keeping us in your thoughts. Thank-you for your support, it truly means so much to us. This road is long and it is hard to believe and accept that we are facing this again. Knowing that Phoebe is surrounded by love, prayers and positive thoughts helps us through.