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, October 26, 2012

Two Years

Two years. It has been two years since Phoebe's original diagnosis. I talk about Phoebe a lot, about all that she has gone through, but I very rarely go there. To those early days. It is painful and really just very difficult to remember and think about. The days leading up to the diagnosis; life with a fussy baby Phoebe who was presumably just colicky. Us trying desperately to settle her and to also settle into our new house with our new family of four.

Then just like that, it was gone. Just like that we found ourselves in a tiny room in the emergency area of CHEO, watching nurses struggle to get blood from our very, very sick baby. And just like that our lives were forever changed.

I am a different person today and one of my biggest regrets rests with the memory of too many visits to the emergency room before Phoebe's diagnosis. I knew something was wrong with my baby, but I never let myself go there. I never let myself believe that cancer could be a real possibility. I took comfort in the words of one emergency room doctor who said that cancer in someone as young as Phoebe was "so rare that it was practically impossible". I held on tightly to those words and I took my baby home. Without any answers, and after no tests were run.  The person I am today probably wouldn't let that happen and I wish I could go back and insist on a test. A simple blood test. I wish I could do this because it would not only have helped Phoebe but it would have changed the mind of this one emergency room doctor who spoke words to me that should not have been spoken.  Nothing, my friends, is impossible.

There are many details of those early days that I have never written about and that I rarely speak about. How Phoebe was poked to have her blood tested every four hours with great difficulty. The fact that her white count was so high that the lab was unable to read it. The looks of sadness, panic and worry on the faces of ICU nurses and doctors. The fear and unbelievable heartache. The blood exchange that undoubtedly saved Phoebe's life. The blood of so many generous donors transfused in, after Phoebe's own diseased blood, thick with Leukemia, was pumped out. This blood gave our baby strength and allowed her to simply begin her fight, thus beginning my extreme appreciation and admiration of blood donors.

I found myself a bit more emotional than usual today, and then I realized that today is the anniversary of Phoebe's diagnosis. Then I realized that we have other anniversaries that are far more important and I wondered if perhaps those very early days would be best laid to rest. That we should celebrate end of treatment, remission, birthdays, and all of the wonderful days in which we have lived without cancer. The days that we are blessed to have our family living, complete, and together under one roof. We should look ahead but never forget all that Phoebe has endured to be here today.  

A sweet and beautiful baby lost her battle with infant Leukemia today. She fought for most of her life and I was very lucky to meet her and her very special Mama while at St. Jude. Her family now has another anniversary to think about and it is one that no family should have to keep.

Hug, kiss, love, and hold your children tightly tonight and each night in which you are blessed to have them.  

Rest in peace sweet Ella.  

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