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.

Friday, April 5, 2013

Phoebe is doing very well. She had an appointment at CHEO today for blood work and a visit with her doctor. Her blood work looks great, everything within normal range and there are no concerns. We saw familiar faces and settled in to the clinic at CHEO well. It is another home away from home in a lot of ways.

The plan has been set and agreed on by all of Phoebe's great doctors and Phoebe started her maintenance chemotherapy today. She will get a combination of three different chemotherapy drugs once a month ... for a year. Or that is the plan right now. She did receive the first dose of two drugs today, the third - a steroid, has been held as we are trying to have Phoebe's t-cells harvested and stored for future use, if necessary. In case of another relapse, they would be available for use in the very promising trial using modified T-cells at the Children's Hospital of Philadelphia (CHOP). With this most recent relapse, we had a very small window of opportunity to harvest these cells and in the end they were not eligible for this study. The hope is that the doctors in Philadelphia will agree to do this and that without steroids on board they will be eligible and can be used if we need them. But the biggest hope of all is that we will never need them.

Throughout this year of maintenance therapy, Phoebe's bone marrow and abdomen (where the mass was, never to return again), will be monitored closely. She will have scans and bone marrow aspirates once every three months, and the first will be at the beginning of May. This will be the first MRI post radiation and I am already envisioning a beautiful belly and healthy bone marrow, empty of anything that does not belong. Perfect scans. My job, among other things, will be to think positively as often as possible and refuse to let those other much darker thoughts in. To continue to believe in mighty Phoebe Rose.

In other news, Mae had her first day back at school today and was very excited to see her friends and her teacher. She had a great day and was welcomed back with open arms. Phoebe, on the other hand, was a bit upset to leave Mae at school and when we picked her up and she told us all about her fun day, Phoebe asked if she could go to school too. When Mae told her no, that she was too little. She crossed her arms over her chest and said "I don't want to talk to you anymore". So eager to do all that her big sister does.

We are back at CHEO in one week, and until then plan to enjoy all that home has to offer. We are hoping we can catch some late season sugar bush fun this weekend which will be another first for Phoebe. Thankfully the snow has stuck around so that we can enjoy a bit of winter in Spring!

Go Phoebe Go ...

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