On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.

Monday, April 30, 2012

All our bags are packed ...

We are packing and preparing for our long awaited trip home. It is hard to believe that we have spent seven months in Memphis, but looking back on all that has happened it is seems like a lifetime.

Over the past seven months we have done and seen many things. We have grown and learned. Mae has mastered the peddles on a bike, and Phoebe has learned to walk. Both have learned new words, Mae's are in French and Spanish and Phoebe's are varied and many. We have met many wonderful, courageous and inspiring children and their families. People we will remember and hold close in our hearts for many, many years to come. We have seen and experienced kindness and generosity in abundance. We have mourned the loss of too many children. Watched Phoebe fight to survive in the ICU one day and play joyfully the next. We have heard the most incredible news and we have experienced so much joy. We have met many very wonderful, determined and simply incredible doctors and nurses. We have been listened to and heard. And we have seen an incredible and unforgettable hospital at work.

While at St. Jude, Phoebe has been cared for in every way possible. She has been celebrated and admired and treated for more than the cancer that took up valuable space in her body. Walking through the hospital today and visiting the many people who have shaped this portion of our journey, I was overwhelmed. The physical therapists who worked with Phoebe - helping her learn to walk, stand independently, bounce, and climb. A baby who refused to stand or use her feet seven months ago. The speech and occupational therapists who despite Phoebe's stubborn refusal to cooperate, worked to help her to eat, drink, and form her first words. The nutritionist who worked with us, listened to and cared about Phoebe's needs and was patient when little weight was gained. The ICU nurses who carefully brought our baby back to health. The doctors who cared for Phoebe like she was their own and listened to each of our concerns. Everyone we have met on this journey have treated Phoebe with so with love, compassion and patience. St. Jude is truly a wonderful and very special place.

Today, the words from Phoebe's two doctors summed up our journey thus far, or at least as much a summary as could be possible. One commented on how far Phoebe has come, telling me that "she is my little miracle" and another in response to my thanking everything they have done said "well we are not done yet". No, we are not done and Phoebe will probably be followed and monitored by St. Jude for most,if not all of her childhood, but we have come so far and have accomplished so much. This step towards home is a huge and wonderful step. It is a step towards some kind of normal, and we believe with all of our hearts that we will continue to take many more big and positive steps away from cancer.

Tomorrow we are heading home on day +152 - we have now officially lapped Phoebe's first transplant as she relapsed on day 76. We have come full circle, but instead of celebrating one year post transplant in a few weeks we are celebratng a home coming and a real and wonderful second chance at a cure. Thank you St.Jude for believing in the possibility of a cure for Phoebe and so many other children.

1 comment:

  1. I have goosebumps I am so happy for you all! Safe travels!