We are back in the hospital. Phoebe spiked a fever last night and because she has no immune system and nothing to fight off an infection, she was admitted to the hospital and started on IV antibiotics.
This morning she still has a low grade fever and the infection marker in her blood is very high. Blood cultures have since come back positive with a gram
positive bacteria in both lumens of her central line, so antibiotics have been adjusted and we are planning to give more granulocytes tomorrow.
We are worried, scared, anxious, upset ... we have been here too many times before and Phoebe has been through too much. To add to the heartache, Phoebe makes sure to tell every nurse, doctor, nurse practitioner and anyone else that enters her room that she wants to go home and that it's her birthday in two days.
On Saturday, Phoebe will turn five amazing and miraculous years old. Many times throughout her fourth year, we worried that Phoebe would not see her fifth birthday. We had too many impossible discussions with doctors this year - talks that no parent should have to have, yet here we are. Phoebe fought every single day that she was four. She fought and struggled more than anyone should have to, just to be five.
When I look back on the past year, I am overwhelmed with all that has happened. It's almost hard to believe that one little person should have to go through so much just to have a chance at life.
Phoebe turned four in Denver when we started a clinical trial that was supposed to be the answer - a drug actually targeted to her leukemia. The first of its kind and what we had been waiting for. It failed to help and her leukemia actually increased while she received it, so we stopped and booked a flight to Memphis.
We have been in Memphis and at St.Jude ever since and during our time here, during Phoebe's fourth year, she has spent over 100 days in the hospital, she has suffered two strokes initially leaving her speech slurred and her left arm and hand limp, she has had seizures, blood infections, remission and relapse of her leukemia, and fungal infections in her brain, lungs, skin, and blood. Phoebe's skin is still marked with spots that were once black with fungus. This most recent fungal infection came with a devastating prognosis, but Phoebe exceeded all expectations. That she is here is a blessing and a miracle.
Following these infections, Phoebe fought her way to recovery. Every day through fevers, nausea, weakness, and pain, she fought. She had to learn to walk again, to use her left arm and hand, and to speak - she fought her body just to be able do all of this and also just to be here. She fought to turn five.
I used to avoid using the word fight to describe Phoebe's journey but right now, it is the only word that fits. More than a journey (which is also the wrong word) it has been a fight and a struggle every single day and with every single aspect of this.
But Phoebe is here and she will turn five on Saturday and despite all of these struggles, she is amazing. She is feisty and opinionated and strong. She is gentle and kind and full of joy. Her laugh will instantly make you laugh and her smile lights up a room. She loves her big sister with everything she has and is excited to join her at "homeschool" in September. She is so smart. She loves music and dancing and sings along even when she doesn't know the words. Weezer is still her favourite, but lately she only wants to listen to and sing "Fix You" by ColdPlay.
She has come so far. She is a warrior and a fighter, but she is also just a little girl who shouldn't have to fight. Phoebe would like nothing more than to ride her bike, swim and play without worry of infection, she would love to go to school and just be 5. No child or person should have to endure so much.
We are so grateful for the care that Phoebe receives, for the nurses who have become her friends and the doctors who work so hard to fix this, but we need to do more. We need to support them in their efforts. We need more funding, more research, more attention, more cures, and less heart ache.
Nine weeks after she turns five, Phoebe will be five years post diagnosis. She will be among the 80% of children who have "survived" 5 years but for Phoebe, this survival includes relapse, infection, trauma, and it is completely absent of a cure. There is no cure for Phoebe right now, only hopes and dreams and chances. We are grateful because we have Phoebe, but please - the next time you hear this statistic, think of Phoebe, and know that we are not alone in this.
Please keep Phoebe in your thoughts and prayers. Please pray for healing, a birthday at home and a five year old Phoebe who doesn't have to fight so hard to be six.
A few pictures from our year ...
Phoebe turning 4