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 2, 2013

Music to my ears ... go Phoebe go

All is right in our little world today.

First thing this morning, Phoebe woke up and wanted to sit on the potty (this makes for big news around here), she did indeed sit and has been, in her words, in "big girl underwear" all day long. I am very proud of her. Despite my requests and efforts for her do this in the past, like everything else, she is doing it on her own time and in her own way. And that is okay.

This afternoon, we got results from Phoebe's MRI and lumbar puncture. Phoebe's spinal fluid is clear and the MRI is normal. Normal. That word is music to my ears. The MRI is a test that is particularly stressful for me. I feel like we can handle nasty cells in the bone marrow (although I hope we never have to), as that is what we have been handling and dealing with for so long, but nasty cells in the belly, I am not so sure. I am so thankful for this good news.

Our next test will be a bone marrow aspirate, at the beginning October and it will be done at St.Jude. We are looking forward to seeing familiar faces and being back at this wonderful hospital. Phoebe is particularly looking forward to visiting the zoo and riding the horse and carriage in downtown Memphis.

Today we have had big and small victories. And tomorrow I know we will have more.

Go Phoebe go ...

We are still working to light Parliament Hill gold this September, but I learned recently (after speaking to many different people in many different government departments) that to light the Peace Tower from top to bottom gold (like was done in blue for Prince George), it will cost $14,000.

I don't think that there should be such a huge cost associated with raising awareness, especially when the point of increasing awareness is to hopefully encourage an increase in funding for childhood cancer research. The Canadian Government, through the Canadian Institute for Health Research, dedicated only 3.13% in 2006-2012 to finding cures for the twelve unique cancers that affect children. Thousands of children are living with cancer in Canada today, and many, like Phoebe, are unable to find options to treat their disease at home. We need to do better. And so, we are thinking outside of the box, and trying to come up with ways that we can light the Hill gold ourselves. We have some ideas, so stay tuned.

In the meantime, if you have not yet signed or shared the petition to light Parliament Hill Gold, please do. And if you have signed and shared, please share again. http://www.change.org/en-CA/petitions/light-parliament-hill-gold-on-sept-21st-for-childhood-cancer-awareness

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