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.

Thursday, February 21, 2013

Written by my amazing friend Heather about Miss Phoebe and her journey. I wanted to share it with all of you.

Thank-you Heather for writing this.

"Phoebe Changed the World"

Phoebe Rose Doull-Hoffman: innovator, pioneer, and inspiration to thousands of people worldwide, is all of two years old. She is a chubby-cheeked toddler who wakes up each day laughing. It was not so long ago her beautiful face was topped with a smooth, bald head. In October 2010, Phoebe was diagnosed with Infant Acute Lymphoblastic Leukemia. Acute Lymphoblastic Leukemia (ALL) accounts for slightly over 30% of all of Canada’s 900 children diagnosed with cancer each year. Four percent of those cases occur in infants under twelve months of age. The disease complicates in younger children, reducing statistical prognosis percentages from the high 80s to the mid-50s. There are rarer complications involving mutations. At nine weeks old, Phoebe had Infant ALL and its mutations. Her prognosis was expressed as a single digit. In exchange for an unknown chance to live, Phoebe has changed the world by giving her body to science, allowing the children who will come after her to benefit from more advanced therapies, and inspiring thousands of people across the world.

It had been nine years since the hospital where Phoebe was diagnosed had seen a case of Infant ALL. A rare, and therefore less studied, disease means options are limited. The initial part of Phoebe’s treatment involved a chemotherapy regimen followed by a bone marrow transplant. A harrowing experience that had Phoebe fighting every day, she relapsed within three months. Her parents were told to bring her home and enjoy her last days. Instead, they looked everywhere, and fought to find medicine to treat her and move her towards a cure. In another city, Phoebe was accepted as a guinea pig for a new drug. At that time, no new pediatric cancer drugs had been approved in 20 years. It was not this drug that would gain approval. The trial failed, and once again Phoebe was left without treatment options.

Time is the enemy in battle against aggressive cells; calls were made all over the world searching for treatment. In what seemed like divine intervention, an innovative and promising protocol was being used at St. Jude’s Hospital and Phoebe fit the tight set of criteria needed to qualify. Phoebe spent nine months in treatment, thrived, and remained cancer free for many more joy filled months. Her treatment in Tennessee was ground-breaking; physicians from Canada flew to St. Jude to study and bring it home with them.

Phoebe’s story, shared in moving eloquence by her mother at http://phoeberoserocks.blogspot.ca, reaches people all over the world. In Spain, a video with “ÁNIMO FIBI!" (Go Phoebe!) was made to raise funds and awareness. Wayne Gretzky autographed memorabilia to be auctioned. Closer to home is Mae, Phoebe’s sister, who attends Kindergarten. Mae’s entire school, staff and students alike, have become invested in helping Phoebe reach her potential. Taped on a huge wall dedicated to her journey are paper stars with simple wishes of health and happiness for Phoebe, written in childish hand and smooth cursive alike.

Phoebe journeys again for new treatments and trials and new hopes for cure. She arrived in Memphis recently, her cancer returned, once again headed into the unknown to be the living pioneer for advancements in medical science, a shining cherub of hope for thousands. In twenty years, Phoebe’s contributions to science and medicine will be mentioned in medical journals, discussed as a ‘case’ and used to educate. Her name will not be mentioned, of course. By then, her body being used to test new treatments will be a statistic, used for tallying how protocols need to change and improve for the children who will be diagnosed after her. Cancer will be a distant memory as she lives her life happy and healthy. However Phoebe chooses to live it, her life will have changed the world for generations to come.

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