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, January 10, 2013


Phoebe is home. Home sweet, sweet home. The contents of her room at CHEO filled a wagon, a stroller, and many, many bags, and barely fit inside our very small car. She left with a collection of medications, an IV pump, overnight IV hydration, IV antibiotics, central line care, and most importantly; many, many smiles.

We are overjoyed to have her home as there were a few moments upon our arrival back in the hospital when we worried this would be impossible. Many thanks to the doctors and nurses at CHEO for bringing her safely through those very difficult first days.

On her first morning at home, Phoebe's big sister Mae woke up early like she usually does and came to our room for some cuddles. Her face lit up when she realized that Phoebe was there too and they shared many hugs. It is hard to know how much all of this is affecting Mae, but it is very clear that she misses Phoebe when she is in the hospital and loves having her home.

Phoebe wakes up every morning smiling and laughing. Literally. And these smiles and her laughter are even more joyful when at home. If we could each greet each day with such joy and enthusiasm despite how we may be feeling or what we are faced with, I believe the world would be a better place. Or at the very least, a happier place.

Every day Mae and Phoebe do something that reminds me to be strong. Today, this lesson came from Mae. Mae, who during her school assembly, stood up in front of the entire school (she is in junior kindergarten) to answer questions about her sister Phoebe. Just thinking about this brings tears to my eyes because I know that it is something that she will probably always remember and I am amazed by her bravery. I have a junior kindergarten Christmas concert memory of being the letter "p for Poinsetta", but this is far more important. I am so proud of her. I thank her wonderful teacher and school for giving her the opportunity to speak about Phoebe and for their support. Today there was a pajama day fundraiser held in Phoebe's honour.

Each day on this journey I am reminded and humbled by just how blessed we are. We are surrounded by so many caring people whose support we feel at every step.

The results of the tests that Phoebe had on Tuesday are slowly coming in. Her spinal fluid is clear of leukemia cells, which is wonderful news. The preliminary results of her bone marrow are clear of leukemia cells and the MRI shows a "significant decrease in the size of the mass". Her first MRI showed a large mass that was close to the size of a large grapefruit. Tuesday's results measured it smaller - a small walnut. Wonderful progress. Our MRI report has also decreased from a very lengthy, complicated, and intense 7 pages, to this week's much more hopeful and less dense and complex 3 pages. More good news. We are waiting for results of the MRD (minimal residual disease) tests of her bone marrow, but we should know those very soon.

Taking this good news and running with it all through the weekend. Monday will hopefully bring us good news from Philadelphia of strong, robust and growing t-cells.

Mae and some of her friends made Phoebe a beautiful welcome home sign. If you look closely, you can see Mae, Phoebe, Jon and I dancing.

1 comment:

  1. Jenny, I have been following your Blog about Phoebe Rose, since I was made aware of her fight by a fellow Warrior Mom, Aimee, Matthew Robert Pierce's lovely Mommy. I wanted to let you know that I pray for your Phoebe and family daily, along with my prayers for Matthew. This is wonderful to read such news and I am smiling for you today! I am glad little Miss Mae has her Sissy back and your family has been pieced together once again. May the Blessing continue to be evident in your lives. God be with you.
    Becca H.
    North Carolina, USA