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.

Wednesday, May 4, 2011

We're here

 It is amazing how quickly life can change direction.  On the drive here Jon and I were reminising about the last time that we were in Toronto.  It was about 3 years ago and it was the weekend that we got engaged.  Now here we are, 3 years later, married with 2 kids and about to embark on the second part of our very long journey to recovery.   We were admitted today at 11am and shown to our little room.  It is small.  Just enough space for Phoebe's crib, the chair bed, and her giant IV pole.  There is no bathroom, but a small sink for washing hands.  There is a very large window that lets in a lot of sunlight and gives us a good view of the city and all of its excitement. We took Phoebe for a walk around the city last night and showed her some of the sights.  She was mesmorized by all of the lights and tall buildings and kept looking up towards the sky and smiling.  She was so happy, and throughout the walk she babbled and called out excitedly, almost as if to say to anyone who was walking by "I'm here!".  Toronto and its children's hospital have a different energy, they are busy and loud, and full of excitement and last night for a few hours, we forgot about what brought us here, and took in the city lights and good energy. 

Now our first day at Sick Kids is coming to a close.  It is almost midnight and Phoebe is sleeping peacefully.  She has had a busy day.  After we were admitted, we were walked through Phoebe's new protocol and told what to expect in terms of medications and side effects. Then our nurse went to access Phoebe's central line to do blood work and get everything ready to start chemo.  Our first bump.  Phoebe's line appears to be clogged.  Right now at almost midnight, one lumen of two is clogged and the other is sluggish.  We need both for Phoebe's treatment as it requires blood to be drawn and medications to be given simultaneously.  Our donor is ready and waiting to donate on the 12th so we have to stick to a strick schedule.  In the meantime without both lines working, Phoebe has an extra IV line in her foot, and is poked everytime her blood is tested.  It is difficult for Phoebe, so we are hoping that everything  clears up by early morning when her first treatment of chemo is due.  If not, they have many contingency plans in place to ensure that the treatment stays on course and her transplant happens on schedule. 

In typical Phoebe fashion, part two of our journey has started with a bang.

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