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.

Sunday, February 24, 2013

Thank-you for believing in Phoebe Rose ...

Today a wonderful fundraiser was held at the Ottawa Art Gallery in support of Phoebe and our family. I am speechless (which is becoming a common theme these days) and just so thankful for all of the truly incredible and kind people that we have in our lives.

To the organizers, artists, the Ottawa Art Gallery, local businesses, volunteers, and everyone who attended and worked to make this day a success, you have helped in so many ways and I can only scratch the surface of what you all mean to us ...

Thanks to the support we have received, we have been able to travel this road together, to keep our family whole, and to allow Mae and Phoebe to grow up and be sisters. Phoebe has spent most of her life fighting cancer and if we were to have been apart she would not know her sister or have developed such a beautiful bond. Mae has helped Phoebe heal in ways that medicine and doctors cannot and she is arguably the most important member of this team.

When Phoebe was diagnosed in 2010, our world turned upside down. Since then, we have struggled in many ways. We have struggled to survive: to keep things together as a family of four, we have struggled financially having to relocate often for treatment, we have struggled to find treatment that would save Phoebe, we have fought for and searched for options and vowed to never give up on the belief and hope of Phoebe's cure.

This recent relapse hit us hard. It hit our doctors hard. It was devastating and hearing the news that Phoebe's cancer had returned for a second time was by far the worst day of our lives. Worse than the day of diagnosis, worse that the news of the first relapse. It was an unbelievably heartbreaking and devastating day.

Each time this cancer returns it does so in a way that is uncommon and thought to be in curable. That day and in the weeks to come, feeling down and devastated, desperate and depressed, we turned to Phoebe. And she was smiling. And therein lies the key. We follow her lead,which this time has brought us back to Memphis, in the hope that it will lead us back to our life without cancer.

We have seen amazing and miraculous things on this journey. We have witnessed the beautiful spirit of our incredible community, complete with the encouragement and energy of people in junior kindergarten to university and beyond. We have watched Phoebe fight through unimaginable hardships, beat down incredible odds, and survive. Not only survive but thrive. Thrive, dance, sing, play and love life and each day to the fullest. We have watched her sister Mae beautifully make her way in her ever changing reality.

And we have felt a life time of heartache.

We have lost too many friends and have made a promise to share the stories of pediatric cancer to everyone who will listen. To raise awareness, create change, and do what we can to make a difference so that the next child does not have to fight so hard. So that the next parents of a child like Phoebe will not be told that there are no options to cure her.

By being at the fundraiser today, or simply by reading and sharing this story, you are not only helping us, but you are helping all of the children and families affected by pediatric cancer. You have made yourself and others aware and it is through awareness that magic happens.

Phoebe is here today and progress is made because of hard working and determined doctors and scientists. Because of a few doctors who agreed to try one more time to save her. Our doctors in Toronto and Ottawa who work hard to improve treatment options for Canadian children so that they too don't have to travel so far from home. The wonderful doctors at St.Jude who just don't give up. Progress is being made because of children like Phoebe and their parents who without any other options, enroll in clinical trials, with the hope of a cure. Together these parents and these children are advancing a cure. But often at a great cost.

What was done for us today is truly amazing. The wonderful organizers: our friends, together with the community, family, teachers, artists, local businesses, children, and media created a tidal wave of positivity and love. We feel the love here in Memphis and we are comforted by the fact that we know that Phoebe can sense all of your arms wrapped collectively around her, your love and positive energy being sent to her,and your prayers for healing.

Today in the Ottawa Art Gallery, Phoebe's own work of art, one of many paintings she created while in patient at CHEO, hung framed among the works of very fine artists. To see it there in a photograph filled me with pride. Pride for Phoebe, and pride for her family and friends, both new and old (and some we still have to meet) who thought to include her artwork in this special day.

Tomorrow we begin round six of radiation. We had a wonderful weekend away from hospital life, complete with fresh air, time at the park, shouts of laughter and joy (and some not so much due to our toddler on steroids), but we enjoyed life. And we are almost there. Almost home.

Half of this battle is believing in the possibility of a cure and we believe. Thank-you all for believing with us.

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