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.

Thursday, August 23, 2012

Wear Gold this September

September is Childhood Cancer Awareness Month and my heart is full of equal parts joy and sadness. 

I haven't written in a little while partly because I don't have much to share which is truly wonderful.  Phoebe is doing very well, loving life and living it as full as a two year old should.  Her last check up at CHEO showed perfect blood work, she is using the potty - randomly but still, and to most people we meet who don't know her she is a regular albeit small two year old.  She makes up for her size with her spunk.  Her big sister is preparing to start Kindergarten in September and together, they fill my heart with joy.  

My heart is heavy and I have not written because there are so many other stories that are not mine to tell that weigh heavily on my thoughts.  Too many children fighting, too many parents forced to make incredibly difficult decisions.  Too much sadness. 

Tonight, as Jon and I were out for a walk with Phoebe and Mae, we were talking about some of these children, children that we have come to love, and I asked him how it is that I had no idea of this world of childhood cancer before it happened to me?  How is it that I was blissfully unaware of the hardships, sadness and pure terror that it brings?  The fact that seven children die of cancer everyday in the US. That the equivalent of an extra large elementary school classroom is diagnosed with cancer everyday.  I remember one child growing up who had cancer.  One.  Today I know far too many.

I have heard many people tell me throughout my journey with Phoebe - of which I have been very open about sharing - that they "just can't read", that it is too much.  And to this I wish I could say ... imagine living it.  Imagine it is your child.  Your life, your devastating new reality, your heart ache, your sadness.  Your loss. 

Something needs to be done and we need to find a cure.  I am obviously very passionate about this because it has happened to me, but my hope is that through writing about Phoebe, one more person might be moved to action - to make a donation, to share a story, to give blood, become a bone marrow donor, volunteer time ... act.

Despite the realities that we have been faced with and the sadness that sometimes fills my days, I am hopeful.  I believe a cure will be found.  I believe in the people that I have met on this journey who are working hard to make it so.  And I have seen progress.  Wonderful progress and positive steps forward.  Phoebe is here because of that progress and because of those steps. 

And so in honor of childhood cancer awareness month and in support of all children who are battling this disease, we have "A Night to End Kid's Cancer".  This special night of music is organized by team "Phoebe Rose Rocks" - a team of twenty (including myself) who are running from Ottawa to Montebello in support of treatment and research of children's cancers in Canada.  It is happening at the one and only Zaphod's http://zaphods.ca/ on Saturday September 15th. 

All money raised from ticket sales will go to CHEO and Sick Kids and their efforts to treat and find CURES for children's cancers.  You have a chance to win prizes, listen to great music, support local talent, laugh, have a few drinks with some great people, wear gold and support children battling cancer and those working hard to find a cure.  A win, win I think. 

For more information on this event, team Phoebe Rose Rocks, or how to purchase tickets, please visit our event page on Facebook.  https://www.facebook.com/events/468169226540055/

Tuesday, August 7, 2012

Happy Birthday Bright and Shining Phoebe Rose

When Phoebe was in the midst of treatment, I remember thinking often, that to make it through a single day would be a small victory.  I would repeat over and over to myself that tomorrow is a new day.  Today, looking back on all that has happened, I am thinking of what a difference a year has made.  This time last year we were anxiously awaiting a phone call or email from our doctor at Sick Kids about possible treatment options at St. Jude.  It was Phoebe's birthday (August 8th), and I was checking my email constantly, keeping the phone line free, while also trying to have some kind of birthday celebration.  We heard nothing that day and when we eventually heard there was no good news of innovative treatment, or of anything at St.Jude and we were left wondering what, if anything, could be done about the Leukemia that was raging untreated inside our baby's body.   We celebrated Phoebe's first birthday quietly and with intense uncertainty.  My sister bought Phoebe a beautiful outfit to be worn on her first birthday - a pink tutu and t-shirt that said birthday girl.  It was too big and realizing this brought tears and sadness as I worried that Phoebe would never wear it, that she would not have another opportunity.  Another birthday.  

Rewind from this first birthday to Phoebe's day of birth and the joy and excitement that filled those hours and minutes.  The day that Phoebe Rose entered this world.  It was a chaotic, frightening and powerful experience, full of joy and intense emotion and as soon as she entered the world, her strength was unmistakable.  Together we fought and struggled, completely drug free, for her almost 10 pound self to be born and then it seemed that we fought for the entire year that followed. 

We didn't know what Phoebe's name was going to be until she was a few days old.  We went back and forth quite a bit, between Rose and Phoebe for her first name, and because the name Phoebe was met with a few adverse reactions from family members, we wondered and worried if it was right.  In the end, it just was.  She was Phoebe and there was no other name that suited her like it did.  A few months later and when we were in the midst of treatment, we learned that the meaning of the name Phoebe is bright and shining and that in Greek mythology Phoebe is a warrior princess.  How wonderfully fitting for our girl. 

And so here we are today, two years later and what an amazing and incredible difference this year has made.  Phoebe will be 2 years old tomorrow.  We had a little birthday party for her on the weekend and she wore her pink tutu and birthday girl t-shirt and she is celebrating and living life as a 2 year old should.  She is now 250 days post transplant and at her latest check up, all of her blood work looked to be perfect.  Life is no longer lived hour to hour or day to day, but we cautiously and excitedly look forward months to Halloween and Christmas, to more birthdays and happy years.  Tonight as I was putting Mae to bed, and almost as if she was reading my thoughts, she said - "I wish that Phoebe grows up to be as big and strong as me, and that she learns more words, and goes to school like me". 

We have met many wonderful people on this journey.  Friends whose children are still in the midst of their battle with this disease, who are faced with uncertainty or a new hurdle.  Friends who will not see their children grow up.  I can honestly say that not a day goes by that I don't think of these beautiful and courageous children and feel so incredibly thankful and blessed for all that we have seen this year. 
This is Phoebe with her "courage beads" - an almost finished necklace that tells a story of her many months of treatment.