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, August 16, 2013

Go gold ...

Sitting here at CHEO waiting for Phoebe's blood work results and listening to a little girl screaming in the room next to us. Her screams reduced me to tears. She cried out for nurses to stop, to wait, that she couldn't take it anymore, that it hurt, then she cried for her hands. She just wanted to see her hands. Earlier in the day, Phoebe's nurse was reduced to tears at Phoebe's screams. Phoebe is so used to being poked and prodded that she rarely asks nurses to stop, or says she has had enough. She just cries. Today she was poked twice for blood work. Cancer is especially ugly today.

Phoebe's blood work results show extremely high liver enzymes. Her doctor suspects that she may be fighting a virus, but she is showing no signs or symptoms other than these very high liver enzymes. Phoebe's liver works very hard, it needs to to clear all of the chemotherapy and medications that she receives. It has been through a lot and we need it working well to continue on this path. Each time we hit a bump in this road, I worry. We have dodged many bullets and the fear of the unknown is real and terrifying. We are testing for viruses and will recheck her liver again next week. If the results are still high, her chemo will be put on hold. Fighting a virus and healing a tired liver is dangerous when you add toxic chemotherapy.

Phoebe's other blood work looks good. Her platelets are a bit lower than they are usually but are still normal, and her white blood count is also a touch lower than it is usually, but is still relatively normal.

September is Childhood Cancer Awareness Month. Please don't forget that kids get cancer too. Please honour these young people, that are fighting for their lives and living through so much pain. Honour their families. Phoebe has fought cancer for most of her life. We are grateful for each day but we live in fear. We rely on advances in research as without them, Phoebe would not be here. Plain and simple, she would not have survived her first relapse.

Awareness is key and there are many things that you can do this September to help.

You can tell the stories of children with cancer, you can wear gold, you can donate blood and/or platelets, you can register to become a bone marrow donor. You can give to an organization that supports childhood cancer research and children fighting cancer. Many large cancer organizations like the Canadian Cancer Society and the Leukemia, Lymphoma Society give very little towards children's cancer research.

You can attend our Childhood Cancer Awareness Rally on September 8th on Parliament Hill and like us on Facebook for more information and updates. www.facebook.com/gogoldcanada.

You can come to The Big Rig in Ottawa on September the 3rd between 3-4pm as Ottawa Mayor Jim Watson proclaims this day as Childhood Cancer Awareness Day. Phoebe Rose will be the Candlelighters' Ambassador and we are very honored to be involved. Thank-you Candlelighters for all that you do for families and children fighting cancer.

We need this story to change. Children should not be spending beautiful summer days screaming for help in a small hospital room.

I would love to hear about what you are doing to raise childhood cancer awareness this September.

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