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.

Thursday, February 9, 2012

Tube free Phoebe continues ...

Watching Phoebe eat is quite possibly the most beautiful sight in the world.  After 15 months with an ng tube and almost a year without drinking anything by mouth, to see her reach for her cup and drink is so wonderful.  There have been moments throughout this journey when I wondered if Phoebe would ever eat or drink by herself again. 

She is not yet eating or drinking as much as she needs to be to gain weight and since her tube was pulled she has lost some weight - going from 9.4 kgs to 8.8 but the doctors are hopeful and want to give her a good opportunity to eat on her own and so they are waiting until Monday (unless something crazy happens before then) to decide if the ng tube needs to be put back in. 

Up until today, Phoebe would only willingly drink water, or juice mixed with water - and we were adding all kinds of supplements to this mixture because she needs, among many things, more calories and protein.  Today in one sitting she happily polished off half an avocado and drank a yogurt and fruit smoothie - lots of fat, protein and healthy calorie goodness, and just like that, things are looking up. 

Speaking of looking up and looking forward - today we also heard the most recent chimerism results and they are 100% donor 2 cells - Phoebe Rose is doing wonderfully well and we are allowing ourselves to hope, dream and think about the possiblity of one day being home.  Mae asks about Ottawa often, and I know that she would like nothing more than to be there - for all of us to be there. 

But, for right now we are simply watching and waiting - Phoebe's blood counts all look good, and except for some elevated liver function tests that the doctors are trying to figure out, all is great.  We are going to spend the weekend putting meat on Phoebe's little bones and life without an ng tube will hopefully continue to be a real possibility. 

Phoebe snacking and enjoying a live show in honour of St. Jude's 50th birthday. 

1 comment:

  1. so cute eating avocado!!! I hope Phoebe will eat more and more and continue to be tube free.
    have a nice week-end! Sophie