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.

Friday, December 2, 2011

Day +1

Phoebe received the first bag of stem cells last night.  Her temperature slowly climbed as they were going in, and reached 40.3 at its highest.  Tylenol wasn't successful in bringing it down, and so today she has a cooling blanket on her while she sleeps.  The doctors have decided not to give  the second bag of stem cells, instead they are freezing them in case Phoebe needs them in the future.  They say that the first bag contained a lot of cells, enough for the transplant to be successful. and that giving her the second day of cells would cause more harm than good.  Phoebe's little body needs to start healing now.

Yesterday morning Phoebe was a picture of health.  She had learned to get into a sitting position from laying down which was making diaper changes interesting, she was cruising around her crib, laughing, smiling, playing.  She was wonderful, joyous Phoebe Rose.  This morning her heart was beating at 215 beats per minute, her temperature was high, and at times her oxygen levels were dropping.  The overnight change in her condition was incredibly difficult to see, but we were told that it is to be expected.  The stem cells that she received were unfiltered, so they contained a lot of T-cells.  These are a white blood cell that normally fight infection, and many of them in an unfamiliar body is wreaking some havoc - while this is frightening to see the hope is that this surge of immune system power houses is also wreaking havoc on any leftover Leukemia.  On day +4 Phoebe will receive her very last dose of chemo (hopefully forever), and its job is to wipe out some of the T-cells and to ease the stress on Phoebe's body. 

Right now Phoebe is resting.  She has been sleeping most of the day.  Her heart rate has come down a bit and her oxygen levels are normal.  She is connected to the monitor and covered with a giant cooling blanket.  The doctors have started her on more broad spectrum antibiotics just in case the fevers are not related to transplant, and they are continuing a steroid to counteract some of the reactions that she is having.  They are doing everything possible to keep Phoebe safe and this eases some of our stress and worry.


Tomorrow is a new day. 



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