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, December 17, 2012

The beginnings of a plan ...

We have the beginnings of a plan ...

Phoebe and Jon are hopefully going to leave tomorrow for Toronto and SickKids. How they are getting there is still up in the air, but I think Jon is secretly hoping they will take the air ambulance/helicopter. The plan once they arrive is for Phoebe to have a central line put in and then she will undergo apherisis, to remove her t-cells in preparation for a very innovative clinical trial in Philadelphia. Yes, Philadelphia.

This trial has been referred to as a "breakthrough" and we are very lucky to have it as an option. No one knows for sure whether or not it will cure our Phoebe, but it has seen great success in others and we are hopeful.

All of this considered, we know all too well how complicated all of this clinical trial business can be, and so nothing is certain. Phoebe's cells, once they are sent to the Children's Hospital of Philadelphia, must grow well in the lab and the doctors there are unsure of how they will grow considering the fact that she has had steroids. So we will wait and see.

There is also a phase 2 trial at St.Jude which Phoebe has been placed on a wait list for. The wait is about 8 weeks, and right now, ironically, she does not have enough disease to qualify. Both trials should be available around the same time (it will take some time for Philadelphia to work with Phoebe's cells), and we have been told that we would be lucky to have a choice, meaning that this clinical trial business is complicated and many things have to align perfectly to ensure successful eligibility.

In the meantime, our doctors are working on a plan that will include a reinduction of chemotherapy, but the finer details of that are still being considered and we cannot begin anything until Phoebe's cells have been collected. I am anxious for something to start as although the steroids appeared to shrink the tumour, it is still very much there and leukemia, as we have learned, waits for no one.

We can not predict what the future holds, and if we are given a choice, we will never know which path is the right one to take. We are happy to have options, and to have many doctors working hard for Phoebe and we continue to take each day as it comes.

Phoebe is doing well. She asks to go home at least once a day, but she is making the most of her time at CHEO. To look at her you would never know that she is so sick, she is full of joy and is often a ball of energy. Last night she was up until the wee hours of the morning, playing sleeping bunnies with her Daddy, and despite him avoiding the part in the song where the bunnies jump, Phoebe would spring up in her bed anyway, shouting "watch me hop Daddy!"

We just love her so much and cannot wait for the day that we can bring her home again.

Thank you all for sharing in our hope and for loving our sweet Phoebe right along with us. She can feel your love, as can we and it truly means the world to us.


  1. hang in there, good options for your phoebe, I am sending you energy. bonne chance.

  2. This journey should not be asked of you again but I too have a Hope who is greater than all do this pain. Love and prayers for you and your sweet girl.