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, July 28, 2014

Making plans

"To live is so startling, it leaves little time for anything else". Emily Dickinson

This is very true of our life. 

Today was hard. Lately, honestly, we have had many hard days. We are hanging on, but at times it is with very little. 

Phoebe had her bone marrow aspiration today. I had convinced myself that the results would be negative. That we were witnessing a miracle, that the remission we saw last week would be more than just fleeting. Phoebe looks wonderful. Her cheeks are rosy, her appetite is as good as always, her energy is perfect, she is a bit grumpy as the high dose steroids wear off, but when she isn't she is a beautiful and happy trooper. Her blood work today looks better than last week - there are no signs of disease. 

Yet we now have 37% leukemic blasts in the bone marrow. From nothing under a microscope to 37% in just over a week. I hate cancer. I hate it with everything I have. It is not supposed to be this way. It is supposed to be slow and calm, not another raging and relentless storm inside my child, who looks and seems perfectly fine. It is not supposed to be at all. 

On the bright side, the bright side that we can glimpse if we strain our necks and stand on the very tops of our toes - is we now probably qualify for the targeted study. This treatment is promising and targeted. Essentially it is what we have been waiting for all of these years. We have hoped for something like it with each relapse - a treatment that is ACTUALLY designed and targeted for MLL + leukemia. Not simply more drugs meant for other cancers thrown desperately at a disease we don't understand. 

We may be going back to Denver very soon. We probably should have stayed,  but at least we were able to sleep in our own beds and experience the comforts of home. For this we are grateful, as there is no place like home and nothing quite like watching Mae and Phoebe play at home. 

The plan right now is to repeat the bone marrow test again on Thursday, as unfortunately, not all tests that need to be run for the study were run. Once we know that Phoebe qualifies we will pack our bags once again. 

We are emotionally exhausted. It is hard to live with so much uncertainty. We long for stability - mostly for Phoebe and Mae.  We have a lot of questions and not many answers. We are trying to go with it and to have faith - we are living life on the tips of our toes, with impossibly strained necks, just so we can glimpse the bright side. 

When we get there it will be magnificent. 

We are thankful that despite all of this, despite this disease that just won't give up, Phoebe is well. She may have cancer but she is not a sick child. She is energetic and full of life and today as I was feeling sorry for myself, I just looked at her and Mae playing the day away and felt better. They make me smile and they give me hope. 

We are also grateful for the support and love being sent our way, for the messages, donations, garage sales, and events that are in the works or have already been held for Phoebe, really mean so much to us. We are doing what we can, but knowing that we can travel this road together without the worry that we will lose all that we have at home in the process, is a huge weight lifted. We read each and every comment and they truly help us through. Thank-you. 

One of the blessings of this life is the beautiful and truly amazing people that we have met. The families that we have met on this journey go out of their way to help us and to help others despite all that they are going through and it warms my heart. It is a beautiful community of people that I am grateful to be a part of although in many ways I wish didn't have to exist. When you share a tiny room in the midst of an impossible crisis, the bonding and friendship is often immediate and life lasting. 

Refuse2Lose Team Bryce - our dear friends who do so much for children fighting cancer in memory of Bryce Jude, a remarkable and unforgettable little boy,  are organizing a "Dine for a Cause" dinner and silent auction on August 28th at Biagio's Italian Kitchen on Richmond Rd. For more details and to purchase tickets, please click here

The Shouldice family, our roommates and friends at CHEO, have dedicated this year's John Shouldice Memorial Golf Tournament on Tuesday August 26th to Phoebe. This is an annual event with proceeds each year benefitting an oncology family. 

For more information, please visit: 

or contact Mike Shouldice at johnshouldicememorial@gmail.com


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