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.

Friday, May 24, 2013

Phoebe had her weekly visit at CHEO today. Jon brought her and has been with Mae and Phoebe full time for the past two days as I am sick. Phoebe's blood work shows that she is just slightly neutropenic, meaning she has very little to fight off infections. Her platelets and red blood cells are on the rise though so we are hoping that her bone marrow is recovering and that this low is short lived.

She also had a visit with an anesthesiologist today as next week there is a plan to remove her double lumen central line and put in a port. A port will give her much more freedom and allow her to enjoy summer complete with splash pads, sprinklers and swimming. We don't know what the future holds and because of the uncertainty surrounding Phoebe's treatment, it is difficult to make a decision to replace a line that she may very well need again in the future as any more intensive treatment, like transplant, needs a central line. But, right now, Phoebe needs to live and life for an almost three year old includes running through sprinklers, swimming and playing in the bath tub, so we are choosing hope, opting for the port and a better quality of life for Phoebe. The port sits under the skin and so unless it is accessed, is not visible, unlike the central line that has "tubies" that hang down from Phoebe's chest. Swimming and really any time in the water or getting wet is not allowed with a central line as it comes with a high risk of infection.

We are hopeful that this procedure will go smoothly and that we have made the right decision, that Phoebe's counts recover quickly and with only healthy cells and that I start to feel better so that I can be reunited with my family that I miss so much.

If you are in the Ottawa area tomorrow, Refuse2Lose Team Bryce is holding their inaugural fundraising event at the Great Glebe Garage Sale. 108 First Avenue is the place to be! There will be treats, lemonade, coffee, music and bargains. All proceeds going towards the Refuse2Lose initiative to support Candlelighters' Suite Seats program. Have fun, eat good food, warm up with a hot coffee (it looks like it might be chilly!), bring home some fabulous treasures and support local children with cancer and a wonderful program.

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