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.

Sunday, January 8, 2012

The Rollercoaster continues ...

And the rollercoaster continues ...  Yesterday was a good day - Phoebe appeared to be doing well, smiling, laughing and clapping along to her favourite episode of Blue's Clues. Then, early this morning, she started vomiting and she spiked a fever.  Jon brought her in to the hospital, blood cultures, stool and urine samples were taken and during this time Phoebe's heart rate started to climb, reaching 230 beats per minute and her blood pressure dropped.  She was quickly transferred to the ICU. 

She has now had x-rays and a CT scan to look to see if her bowels are twisted and/or obstructed and surgery has been in to see her.  Many problems that occur in the bowels, it would seem, have to be surgically fixed.  Thankfully, she doesn't appear to have any of those problems, but they are monitoring her with blood work every six hours and more x rays and ultrasounds.  Her blood thinners are on hold in the event that she may need emergency surgery.  The blood cultures that were taken early this morning quickly grew a gram negative bacteria, one that is considerred to be quite ferocious and so antibiotics have been adjusted to treat it. The bacterial infection originated in her bowels, spread to one lumen of her central line and then also to her peripheral blood.  The line may have  to be removed, and if it is removed, because we are so soon post transplant, she will most likely need another one.  That will be line number 8.  I think. I have lost count. The low blood pressure she has been experiencing is a symptom of sepsis - this is where the bacteria enters and poisons the bloodstream causing many, many life threatening complications that I just don't want to think about right now.

The plan is to continue with antibiotics, bowel rest, and fluid.  The fluid will help to keep her blood pressure up, the antibiotics will hopefully kill the bacteria and the bowel rest will allow her to heal and to prevent any further damage that may require surgical intervention.  Right now she is also resting her body, connected to the monitor for her heart rate, oxygen saturation levels, and constant blood pressures are being taken.  She also has a tube in what was her free nostril to pull fluid from her belly and bowels. They are monitoring her very closely, her blood pressures and heart rate have been stable for most of the day and she is where she needs to be to get better, but I can't help feeling intense fear and panic over how quickly all of this happened and the fact that once again, Phoebe is in a very precarious and fragile place.

While the doctors do their thing to help Phoebe to get better, our part of the plan is to surround her with as much love, positive energy, hope and prayers as possible and to support her as she fights her way through another obstacle on her road to recovery.  Please help us to do this and send some love Miss Phoebe's way. 


1 comment:

  1. i hope Phoebe will feel better soon. I send lots of love, Sophie