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, November 26, 2012

Bright, beautiful days

Many things have brightened my days lately, so I thought I would share a few.

Phoebe has taken the very last dose of a drug that she has been on for over two years.  She took the last few weeks of this drug, all by herself.  Telling me, "I got it" and snatching it out of my hand to put it in her mouth.  This may not seem like a big deal, but to Jon and I, it is huge. There was a time when we would have to hold Phoebe down and force her to take countless medications. Following advice of well meaning and knowledgable doctors, we did as we were told. This was not only the last dose of this drug, it marks the last dose of all post transplant drugs.  Miss Phoebe is drug free.

Today, Phoebe got into a snowsuit and made her very first snow angel.

Phoebe has taken to carrying a Santa Claus ornament everywhere she goes. She has affectionately named it "Christmas" and will give him hugs and kisses. It is a beautiful sight.

If you ask, Phoebe will tell you she would like Santa to bring her a princess. Mae will tell you that although she does not wish to sit on Santa's lap, she is going to draw him a picture and would like him to bring her a bath for her baby.  And they have decided that Santa would prefer milk instead of juice.

Last weekend we hung our Christmas lights outside. At the sight of these lights, Phoebe said a very long and quite adorable "awwwwwww". Mae was so excited to show Phoebe the lights that she woke her up from her nap. It was worth it, for all the times she said "look Mae".

We are getting ready to celebrate our very first Christmas together, at home, as a family of four.

Last week, Phoebe's check up at CHEO showed wonderfully normal blood work.

While at CHEO we saw many wonderful, familiar and smiling faces.  Happy to see Phoebe growing up. 

Our visit included a flu shot and a shot, given in each leg, to help prevent RSV. So many pokes. Mae spotted Phoebe's many band aids, and as I was putting her to bed she asked if we could make a wish. She wished for Phoebe to get "better and better, and for her bobos to go away". The first part of this wish was a nightly one while Phoebe was going through treatment, and hearing it again made me realize how much this has affected Mae. The sight of the band aids, hearing Phoebe tell her she had "bobos", brought back this familiar wish and a longing for her sister to be healthy, and it had me in tears.  Sweet, sweet Mae. Best big sister ever.

We celebrated Mae's fourth birthday yesterday, in the comfort of our own home, surrounded by family. 

We are looking forward to many more holidays, birthdays, and just regular days if it means they are spent together, and we are holding on to hope that we will continue to live this new life that we have gotten so used to. 

We are 360 days post transplant. 360 days without cancer.  

Go Phoebe go.  

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