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.

Tuesday, September 8, 2015

The first day of school ...

Today is the first day of school. We didn't pick out a first day outfit and pack lunches. We didn't rush out the door to catch the school bus. I didn't drive behind the bus to see my girls reunited with their friends and teachers, and I won't be picking them up afterschool - with smiles and excitement to tell me about their day with new friends and a new teacher. 

Instead, we woke up in the hospital this morning in preparation for exploratory surgery on Phoebe's sinuses. We have been in the hospital since Thursday and things are improving, but the doctors want to be sure that we aren't missing anything - like an aggressive fungal infection in Phoebe's sinuses, and so today, on the first day of school, Phoebe was supposed to have surgery. This surgery has since been postponed because Phoebe's hemoglobin is too low and blood wasn't able to be given in time, so instead we woke up in the hospital on the first day of school for just another day of doctors, tests, blood work and a sad Phoebe who just wants to be home. 

Inspired by all of the first day pictures on Facebook, we also took some pictures, but they are not the first day pictures that we hoped to take - with both girls smiling on the front steps, or getting ready to board the school bus. Phoebe is in senior kindergarten, yet she has never set foot in a classroom or on a school bus, and this year will be the second year that Mae starts school without her friends. We are homeschooling, and even if it is between appointments and in the shadow of cancer, it is with both our girls - and for that we know we are among the lucky ones. 

Please remember that kids get cancer too. It is devastating and traumatic and just not fair and we need to do better. 3% of all federal research funds is simply not enough. It is not enough to support childhood cancer survivors, over 80% of whom are living with a chronic or life threatening long term health issue. It is not enough to cure our kids as there continue to be childhood cancers for which there is no hope of a cure and very little research to advance it, and it is not enough to ensure that all kids with cancer in Canada have access to the treatment they need regardless of where they live as this currently does not happen. 

We need to invest in research, and by doing so, invest in our children's futures, because all children should get to stand proudly on the front steps as their just as proud parents take a back to school picture. 

First day of school photos should not look like this. 

1 comment:

  1. Heartbroken that your girls did not have the first day of school you were hoping for.
    Praying, praying and praying some more for Phoebe and her mommy, daddy and sissy!