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, June 12, 2014

Still waiting ....

We are still waiting to hear from OHIP.

In the twelve days that we have waited, the disease in Phoebe's bone marrow has grown and now takes up 50% of this precious and valuable space. We heard these results yesterday and we are no longer in denial. This nightmare is actually happening. Phoebe has an amazing ability to live and thrive despite this - she looks perfect, her blood work looks perfect, but we know, because we have been here before, that if left untreated, this disease will quickly spill into her blood stream, her liver and spleen will swell, and it will become increasingly difficult to control. Had this promising and targeted therapy been available in Canada as a clinical trial, we would have started treatment by now. We would have started with a lower level of disease, giving Phoebe fewer challenges. We would not be forced to give Phoebe more of the same old chemotherapies that not only have failed us multiple times, but are hard on Phoebe's body. Drugs that still cost OHIP money, drugs that OHIP will pay for over targeted therapies that are less toxic and actually have a chance at working. If our health care system prioritized high risk cases and listened to Phoebe's doctor's pleas, that we don't have 2 weeks to wait, we would have heard by now and we would have been able to plan, start some kind of treatment, or even think of alternate ways to get this treatment at Sloan Kettering. Everything, all plans, all decisions, rest on this answer from OHIP. It is not okay that we are still waiting. It is not okay that OHIP often refuses to cover experimental treatment. How are we supposed to move forward and towards a cure if we don't support research and innovation? The clinical trials that Phoebe has participated in have been less invasive and less toxic than any treatment she has received from any approved protocol, but most importantly, they have been more successful and they have given us TIME - the most precious and valuable gift and something we are desperate for more of.

We are hanging on, some days by a very thin and precarious thread, but we are hanging on. Phoebe is the beautiful and joyful soul that she always is and we love her so much. This morning, her big sister climbed into her bed just to cuddle her and there they were when I went upstairs, arms wrapped around each other, giggling. We have been here before - 3 years ago we waited 7 weeks for a clinical trial without giving any treatment. We arrived at SickKids with a very, very sick baby, but we made it through. We have had 3 years since those very dark days. We have two kids who are growing and thriving in the face of the struggles that this life has given us. We are complete. Unlike previous relapses, we have the potential to receive a new treatment, something we haven't tried, something that is actually targeted to MLL+ leukemia. Sometimes it seems like we are not moving forward, but in many ways, we have taken huge steps. We have many things that 3 years ago we worried were impossible. At times, the future is hard to imagine, but when we do, it is still bright. 

We are at CHEO today to start low dose chemo, we are planning to do this as we wait in the hopes that we can find a balance between enough disease to qualify for the trial and enough chemo to stop the storm from raging out of control. In the meantime, we will live our lives as we have for much of his journey - with hope. We will watch Phoebe as she chooses to laugh and play despite all that is going on, and we will try to keep if together. 

Thank-you all for your support as we travel this very long journey. Your messages, comments, phone calls, offers to help, gifts, prayers, positive thoughts, and love, truly do help us through. There is strength in numbers. 


  1. Have you been in contact with your MPP? They can help move decisions like this along - they don't have any influence over whether or not they get approved, but by working with staff in the minister's office they can help to get a decision communicated to you sooner.

  2. Oh Jenny, your words get me every time. This is heartbreaking. As always, I'm sending you and the girls love and hugs during this awful time.