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.

Wednesday, February 23, 2011

Courage Beads

I have been making a necklace for Phoebe.  It is made up of "courage beads" and many of the children here have similar ones.  Each tiny glass bead represents a step taken towards recovery.  The red beads represent all of the pokes and intravenous lines that Phoebe has been given, she has over 200 red beads on her necklace.  Each white bead symbolizes a treatment of chemotherapy, the black are for antibiotics, blue are for days spent in the hospital, there is a bead for the ICU, and one for bone marrow aspirations and lumbar punctures.  Each bead tells a story.
Although Phoebe is too young to understand what the beads mean or even why she is at the hospital, we have decided to make her a necklace because one day in the future we will have to tell her this story. The necklace is a symbol of her strength and courage, and of all that we have gone through as a family.
Today we will add five beads to her necklace: two for her daily injections, one for chemotherapy, one for the catheter that she had inserted to protect her skin from the chemo, and one for being brave because today she will receive her 6th treatment of high dose methotrexate, a chemotherapy that runs through her body over a 24 hour period and causes mouth sores, mucositis, and terrible nausea. 
I look forward to the day when we can sit down with Phoebe and Mae and look at the necklace and tell them the story of Phoebe's journey to recovery.  Perhaps Phoebe will also want to visit the oncology ward to proudly display how her necklace will easily stretch from one end of the long hallway to the other.

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