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, December 14, 2011


Phoebe was moved to the ICU this afternoon.  She appeared to be turning a corner this morning, her fevers were less frequent and her rash looked better, but by early afternoon her condition began to worsen.  Jon noticed her belly getting harder and more distended, and she looked to be in an incredible amount of pain.  Her pain was not being managed well and it escalated which caused her heart rate to increase and her oxygen levels to fluctuate as she was grunting and holding her breath in response to pain. On top of all of this, an xray of her lungs showed inflamation and swelling which was causing her to wheeze and at times making it difficult for her to breathe, plus her kidney function is elevated, and the doctors suspected that she might have VOD (veno-occlusive disease), this is something that she also had with her first transplant and occurs when there are blood clots blocking small vessels and blood flow from the liver.  It is serious and not something we want to live through again.

The doctors decided to move Phoebe to the ICU so she can be closely monitored and they are hoping that the corner that we all thought we were turning this morning is still on the horizon.  Results from her ultrasound show an enlarged liver, but no evidence of VOD - good news.  Her kidneys, although they have also taken a lot of abuse and are struggling to work as well as they need to, also looked okay on the ultrasound.  Also good news.  Furthermore, Phoebe's pain appears to be somewhat under control, and the doctors have ordered a steroid, of which she has had one dose and her breathing also seems better.  The steroid will help to slow things down, as the rapid engraftment seems to be at the root of all of these problems as it has caused inflamation throughout Phoebe's body. 

The road that led us to the ICU, is obviously not one that we would have chosen. No one wants to see their child in intensive care, but sometimes, as we have learned throughout this journey, you must take the difficult roads to get to the smooth ones.  We are hoping for better days to come, to see Phoebe's beautiful smile and to hear her laughter.  We want our Phoebe back.

1 comment:

  1. so sad to hear that Phoebe is in the ICU...good luck, I will be sending you some positive energy