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.

Wednesday, January 23, 2013

Thank-you Manor Park

Today when I dropped Mae off at school, I couldn't help but notice the beautiful showcase that the school has decorated in honour of Phoebe's fight. It is filled from top to bottom with stars, not a star free space to be seen, and each carries a wish for Phoebe. It was enough to bring tears to my eyes as each wish was beautiful and heartfelt and so personal. It is clear that these kids are aware of Phoebe's struggles and their empathy and wonderful hearts shine brightly. There were wishes about swimming, playing in the park, getting better. Wishes for sunshine, time at home, time as a "regular kid". There were hugs sent and reading the hopes and wishes of these kids, many of whom have never met Phoebe - made one other thing very clear.

Manor Park Public School, its staff, students and community rock.

Mae's teacher Donna Muldoon together with fellow teacher Sarah Horton, principal Shari Brodie, and staff have truly made a difference. Reading the wishes lifted my spirits in a way that I cannot describe. The wonderful staff have taken on the task of helping our family with so much enthusiasm and heart and I am so overwhelmed (in a good way) by all that they have done.

Tomorrow night in the school gymnasium there will be a fundraiser for Phoebe. It is a performance of the popular and fantastic, Monkey Rock Music. Thank you to Manor Park, staff and students, and the wonderful folks at Monkey Rock Music for organizing this great event. I am looking forward to watching Mae dance and rock to her heart's content. For more information please visit www.monkeyrockmusic.com

And now for sweet Phoebe Rose. She continues to keep all of us on our toes. Today she spiked another fever. This time is was not questionable and it was not low grade. She has had blood and urine cultures taken, and an ultrasound of her belly. Her counts look good, thankfully. She is still holding on to her platelets and red blood cells, even making some platelets, and her white blood cells are within normal range. The steady climb of white cells however does suggest that she is fighting something and the ultrasound shows an infection in her ureter. Probably related to the stent that is still there and so she is being started on antibiotics and admitted, once again, to 4 North. Our home away from home.

We have not yet heard from Philadelphia and to be honest, it is hard not to worry. My greatest anxiety rests in the fear that they will say no, but also if this is the case, that our doctors will stop trying to find a cure for Phoebe. That the task to cure her will be considered too hard. It keeps me awake at night.

We can only hope that Philadelphia will come through, or that something else, some other innovative and promising option will surface.

Please continue to hold on to hope and pray for our sweet Phoebe Rose.

We need a cure.

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