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, January 10, 2012

Better days

Phoebe is on the mend.  Still in the ICU but hopefully moving to the transplant ward today.  The first day in the ICU saw many worried looking doctors, coming in to check on Phoebe frequently and looking fearful for what could have been.  The second day saw the same doctors only this time they came in with looks of relief and amazement as to how quickly Phoebe had turned things around.  Sepsis can cause, among other things, organ failure and in a person like Phoebe who not only has a new immune system but is also on immune suppression, it can be very serious and sometimes fatal.  Thankfully it responded to treatment quickly and before it could cause further problems.  It was a very difficult and trying couple of days and we are thankful that we appear to be on a smoother path - once again.

There is an element of fear in each of our days.  Fear of Leukemia and relapse, of the unknown, and now of crazy and aggressive bacteria.  Yesterday in response to this crazy and aggressive bacteria, Phoebe's white blood cell count climbed to 25,000.  Seeing that number on the print out of her blood work caused me incredible anxiety, fear, and panic.  Phoebe has never had an immune system to mount any kind of response in the past, so we were somewhat unfamiliar with seeing how a "normal" bone marrow functions.  A normal bone marrow pumps out more infection fighting white blood cells to respond to and kill the infection causing bacteria., and this is just what Phoebe's did.  Amazing that it has the capability to mount such a response, and reassuring that it is not Leukemia.  Reassuring is too small a word to describe the immense sigh of relief that I let out when the doctors told me that this rise in white cells was not cancer related and I look forward to the day when my mind doesn't irrationally jump to all things cancer.

Today the doctors are planning to move Phoebe back to the transplant unit, and we have started to feed her again.  Very slowly because her gut took some abuse and temporarily shut down with the infection.  She is getting 5mls every hour, which is just enough to keep her gut working but not nearly enough to sustain her.  In total she will receive just 120 mls of formula today.  4 ounces.  She seems hungry and we would like to give her more but the doctors are worried and cautious and we trust their decision.  Before this happened Phoebe had made a lot of progress with her eating and weight gain and we were even imagining a future without the feeding tube.  We seem to be starting over but are hopeful that she will quickly recover and begin to love her snacks again.

For now we look forward to moving to the transplant unit, to hopefully allowing Phoebe to eat more, and to bringing her back home.  This situation has shown us just how fragile Phoebe is, and how quickly things can deteriorate and change direction.  There are no words to describe the relief we feel over how she has recovered and we are grateful for the care that she received in the ICU and the love she was sent from all of you.

Here's to better days ..


  1. I am so happy for you, wonderful news. Still praying for little Phoebe

  2. Thank goodness.... We fervently hope that 2012 will get better and better for you all.
    Sending warm wishes across the Atlantic,
    Susan and Steve
    (Ros and Michael's friends in the UK)