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.

Saturday, June 11, 2011

Family reunion

Still taking steps forward and towards home.  Phoebe's giant pole of pumps is slowly shrinking, and she is now only connected to one small pump for IV fluid, antibiotics, and platelets.  She has started to make her own red blood cells, but still needs daily platelet transfusions because they are not there yet. She has been working hard and playing hard, and for the first time, she has learned to stand up and bear weight on her legs while being supported.  In the past she would curl her legs up towards her stomach whenever we would try and get her to stand, most likely from exhaustion and legs too tired from fighting leukemia to do much of anything else.  But now everyday she appears to be getting better.  There are still many steps to take towards a full recovery, but we are getting there.

I was so excited that she ate a rice cracker that I went out and bought a selection of baby snack foods.  Healthy and somewhat nutritious finger foods for babies.  Phoebe has sampled a few and although she is not eating much, she is making progress and will now open her mouth for the spoon.  She will usually only open her mouth once or twice, but it's a start. 

Phoebe has also been allowed to leave her room, so we have taken a few trips to the family room or the atrium to visit with her big sister Mae and to be together as a family.  Our visits are usually brief, squished in between platelet transfusions, Phoebe's many naps and tube feeds, but we enjoy the time even if it only a few minutes.  Mae is so excited to be able to see her baby sister again, and she insists on bringing a new toy for Phoebe every time she comes to the hospital - sometimes she brings books, other times her own cherished babies and dolls.   Phoebe always saves her biggest smiles for Mae, and her face lights up when she sees her coming - Mae  is usually running with remarkable speed towards her baby sister, so she also gets some giggles too.

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