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, May 14, 2012

165 days

Yesterday marked one year to the day of Phoebe's first transplant.  It was Friday May 13th, 2011 that Phoebe received what we had hoped would cure her.  The day before this life changing event, a kind and selfless woman woke up somewhere in the world, went to her local hospital, and donated her bone marrow.  All with the intent to help and possibly save someone she had never met, and will probably never meet.  The world, I have learned, is full of some very incredible and kind people. 

This year on the 13th, instead of celebrating one year post transplant we celebrated 9 days away from a hospital, and mother's day, together and outside the confines of a hospital room.  Instead of rejoicing in milestones that could have been, we rejoiced and celebrated milestones that are.  Phoebe is 165 days post a second transplant.  She is walking, talking, and loving her new found freedom.  We will never know what life would have looked like had our journey been shorter, less traumatic or less chaotic; without the extra stops in Toronto and Memphis, and frankly it really doesn't matter.  We are here, Phoebe is here, and despite our bumps, we are adjusting and happy to be almost 6 months post transplant.

Life could be very, very different and we take each day as it comes and try to celebrate it for what it is: a gift and a blessing. 

Today our 9 day non-hospital streak ended with a short visit to CHEO.  Phoebe is good.  The visit was simply to go over her care in a nice and stress free way, rather than to have a first visit back a chaotic one with a fever.  For the time being, Phoebe's post transplant care will be handled by Sick Kids and St. Jude but any fevers or emergency will mean a visit to CHEO.  This visit was a kind and thoughtful suggestion made by the staff at CHEO and one that was happily taken up by Jon and I.  It was nice to be back, to see the smiling and welcoming faces of doctors and nurses and it is a wonderful feeling to know that many of these faces were thinking of our sweet Phoebe and hoping for her safe return. 

In other Phoebe news, she is walking more and learning new words everyday.  She is loving being home with Mae and most mornings, shortly after she wakes up, she calls out to her sister from her crib.  Mae loves this and will usually go in to Phoebe's room and say "I'm here!  Phoebe, i'm here!"  When this happens, it is hard to not wake up with a smile on my face and hope for a wonderful day.

To learn more about becoming a bone marrow donor - please see www.onematch.ca

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