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.

Sunday, May 5, 2013

Big day ...

Tomorrow is our big day. We start bright and early at 7am and Phoebe is scheduled for an MRI, bone marrow aspiration and lumbar puncture with chemo.

Following the tests, CHEO will send samples of bone marrow to St.Jude so they can run chimerism and MRD tests. And then we will wait. And hope that our miraculous good news continue.

We are enjoying our days and life is getting back to normal once again. To add to this normalcy, Phoebe's doctor at CHEO is working on replacing her central venous line with a port. A port can also be used for medicine and blood products, but it sits under the skin, whereas the CVL comes directly out of Phoebe's chest. With a port, Phoebe can bathe normally. She can swim, run through sprinklers, and enjoy her summer. We would love to be able to live without any line at all, but if we need a line (which we do), this is the best one for Phoebe right now. The CVL will be necessary again if Phoebe needs more intensive therapy, but we are hopeful that will never happen and we can simply ride out the rest of treatment with a port.

In other news, today we walked 5km as part of the "CN cycle for CHEO", an event that raises awareness and money for treatment and research of oncology at CHEO as well as supporting Candlelighters and the Ronald McDonald House. All important charities. Today's event raised 726,410 for pediatric cancer initiatives in Ottawa.

It was a good time and Phoebe walked and walked and truly enjoyed her day. She pointed out geese, balloons, flowers, and anything and everything else she spotted along the way. We walked among family and friends and childhood cancer heroes. It was a good day.

As anyone who has been reading this blog knows, awareness is very important to me. It is through awareness that funds are raised and research happens. And it is through research that answers and cures are found. And to be honest, without the progress that has been made recently in the research of Phoebe's cancer through clinical trials and new treatment, we would not have our girl with us today. We have relied on research, new treatment and new options for some time now. Research is so very important and it will continue to be important and essential until pediatric cancer no longer exists.

1500 children will be diagnosed with one of the twelve different types of pediatric cancer this year in Canada. One in four of these children will die. There are children's cancers that are very treatable, overall I have read that 70-80% of children are cured. While this is a wonderful and encouraging statistic it does not tell the whole story. What is not told in this statistic is that many children are treated for 3-4 years and many suffer from devastating and life altering long term side effects as a result. Including secondary cancers. That many childhood cancers are not even close to being cured. Many, like infant Leukemia, have devastatingly low survival rates. Some are without any proper treatment at all.

Phoebe will be cured of her disease, I believe she will. I believe that she will continue to beat down the odds that at times have seemed insurmountable, but at the end of the day, when we have fought this beast for years, we will spend the rest of our lives worrying that she will be among the children who receive radiation and chemotherapy and develop a secondary cancer. Or we will worry that she will suffer one of the many, many other devastating long term side effects.

But for now we will do what we can. We will live and celebrate life. We will work through whatever we are given and we will continue to walk and run and write and do what we can to raise awareness.

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