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.

Tuesday, December 6, 2011

So long chemo

Yesterday, Phoebe received her very last dose of chemotherapy, hopefully forever.  It is high dose cyclophosphamide and its job is to kill some of the many T-cells as a way to prevent graft vs. host disease and also to give Phoebe's body, which has been deep in battle with these cells, a bit of a break.  These cells will eventually come back once Phoebe engrafts and her bone marrow starts to make new and healthy white blood cells.

Because of how Phoebe's first transplant went, it is hard not to write "hopefully forever" when imagining that this is the last dose of chemo.  The memory of Phoebe's relapse is never far from my mind, and while it is something that we try not to focus on, its memory serves as a constant reminder of how precious and wonderful time is.  We unfortunately don't know what the future holds but we hold on to the hope that this will be the last time that chemotherapy will run through Phoebe's veins.  

Phoebe is doing well.  Her blood work, liver enzymes, kidney function and all of the other things that transplant affects look good.  The doctors are slowly starting to feed her again, through her ng tube.  Today she will receive 10mls of formula every hour.  Not a lot, but it's a start.  Her feeds have been on hold since her transplant because there is a worry that she will become nauseous and vomit and possibly aspirate feed into her lungs.  There is a risk of developing pneumonia if this happens and that is a risk that no one wants to take.  So we are starting slow.

Phoebe is sleeping a lot and when she is awake she is very tired.  She still plays and laughs and when she is mad she shouts and makes herself heard, but the spunky and feisty Phoebe is not quite back yet.  That too will take some time.  And so it is a good thing that we have time, a lot of it, to wait for Phoebe to get better.  We believe in a cancer free future for Phoebe and we will wait and fight for as long as we have to to get there.

To all of you who have believed and hoped with us,  kept Phoebe in your thoughts and prayers and close to your hearts.  Thank-you.  There are no words to express just how much this means to us. 


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