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.

Monday, May 30, 2011

So long yellow gowns

Phoebe's white blood count is 4 today and her neutropolys are up to 1.68.  Very impressive Miss Phoebe Rose.  Phoebe has now surpassed the magic numbers for engraftment, so we no longer have to wear the lovely yellow gowns over our clothes.  We are out of isolation, but Phoebe is still on a monitor for her heart rate and oxygen levels so there won't be any trips outside the room.  Or at least not yet.

Losing the yellow gowns marks a very important accomplishment.  It means that the transplant was successful and that Phoebe has engrafted.  Her bone marrow is now making white blood cells, the red blood cells and platelets, we have been told, will come next. 

Our doctors are getting to know Phoebe better, and are starting to expect the unexpected.  This morning in rounds they discussed Phoebe's many issues but commented that most of them are starting to clear up or look better.  The main issue that remains, and that has the doctors stumped is Phoebe's liver.  Although her enzymes are now back to normal and she no longer has veno-occlusive-disease, it is still enlarged.  An ultrasound of her liver and kidneys this morning showed that both have good blood flow and appear to be working well, all things considered, but that her liver is still very big.  They are monitoring the liver and because Phoebe has been afebrile for the past 24 hours they have decided to stop three of her four antibiotics.  They are also continuing to wean her from morphine, and are planning to also wean her off of the TPN (IV nutrition).  The hope is that once we remove some of her many medications and start to peel back the layers, her other issues will also work themselves out.

In the meantime, Phoebe's personality is coming back.  We have had more smiles, and she has been sitting up and playing, reaching for toys, and having fun watching her favourite Baby Einstein videos.  This morning she even "danced" a bit to Old McDonald.  She is also back to her feisty self and has started to fight with her nurses again.  She very forcibly pushes their hands away every time they try to take her blood pressure or temperature.  Although it makes their jobs more difficult, it is nice to have our feisty Phoebe back. 

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