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, December 15, 2015

Phoebe's eulogy - November 29th 2015 

It is impossible to put into words how we feel or how much we will miss Phoebe, what she meant to us, and the intense void that she has left in our lives - so instead I thought I would share a few words about the small but mighty person that Phoebe was and the big legacy she leaves behind. 

Phoebe was born on August 8th 2010 and from the very moment she entered this world, she was a force. We chose the name Phoebe because we loved it and it just seemed right. We learned after Phoebe was diagnosed with cancer that her name means "the bright and shining one" and warrior princess and she certainly lived up to her name. Phoebe was our bright and shining star  - she was given a very difficult life, but to Phoebe it was beautiful. To Phoebe everything was worthy of joy and she made the most of every second she had. 

Phoebe was wise beyond her years and often seemed to know more than we did. Looking back now, I think she probably did. Even as an infant, I remember thinking that her eyes were trying to tell me something. Like my Granny May would say - she's been here before. She was a beautiful old soul. 

Phoebe never thought of herself as sick - as her parents, we worried and would always ask her how she was feeling and if she was okay - she would always say in her sassy way that seemed more like a teenager than a five year old - "I'm fine now please stop asking". She would not want to be remembered as the girl who fought cancer  - she would want to be remembered as the girl who lived. Because she did. She lived her life joyfully and she opened our eyes to what life is truly about. Every chance she had Phoebe was trying something new. She laughed and played and jumped and danced and sang her heart out despite all that she was going through. Her energy was contagious and her laugh was the most beautiful sound.  She was just incredible - the coolest kid. She had the best taste in music for a five year old, often requesting we freeze dance to pumped up kicks and weezer. Even at 3 years old, Weezer was her favourite band. She loved good food and much to her daddy's delight, would request he make her "restaurant food" and offer to help. She was fiercely proud - of herself and her big sister and all they would do together. She was feisty - so feisty and not at all afraid to speak her mind. Even at 5 years old, she made her wishes very clear. She bossed us all around, always reminding us to do what was right whether it be to put a seatbelt on, for Mae to do her homework, or to eat healthy food - just this past Halloween she reminded all of us that candy is bad and made sure Mae brushed her teeth after every sweet. we loved it. We loved her little voice. For five years, She defied all logic and science and thrived in the face of a very aggressive cancer. When babies relapse like Phoebe did, there are no treatment options, no cure, and often no hope. This hasn't changed, but Phoebe lived and loved and played for 4 and a half years after her first relapse. 

Phoebe taught herself to read. One day, she asked if she could read a simple book to us and promptly picked it up and started reading. Jon and I looked at each other and mouthed the words - did you teach her this? She drew and painted with so much talent and creativity, that our hearts bursted with pride, Phoebe could put together lego well beyond her age with one hand; she was always the builder - Jon, Mae and I, the "piece finders". She believed she could and so she did. After spending 2 months in the hospital recovering from a stroke that affected her speech and large and fine motor skills, the very first thing Phoebe did when she got home was ride her tricycle. And she was fast. After a fungal infection that is normally insurmountable - Phoebe learned to ride a bike and a scooter. Ten days before she died she asked to try roller skating - and she did. Phoebe was a miracle - all that she accomplished, the time she had, each milestone - they were all miracles. At times it seemed that Phoebe was unstoppable, but then it was clear that our fearless leader needed a rest. 

We learned so much from Phoebe and in many ways she was our teacher. We learned about love - what it is like to really and truly love because watching the love that was shared between Phoebe and her big sister Mae was the most beautiful thing I have ever seen. Phoebe loved with her whole self and we loved her right back. Phoebe taught us to speak up for what we believe in and to never give up. We learned to seize the day - that all of the little things that we complain about or think we need in life really don't matter. Phoebe taught us to always choose hope - that anything is possible. 

Phoebe inspired us to be better. She inspired her community. Her journey taught us that we need to do better and Phoebe taught us that we can do better. She would often tell us that what she was going through was not okay - she was very clear about this - as much as she loved life and found joy - fighting cancer as a child and all that comes with this -- it was not okay. I have often avoided using the word fight to describe anything about Phoebe - it didn't seem right because it is not right for any child to have to fight for a chance at life, but These past five years, Phoebe really showed us how to fight  - and now that Phoebe is not here we will continue her fight. Telling Phoebe's story does not end here, in fact, in some ways it begins. What we do now. How we honour Phoebe. How we make sure her story continues is so important. We have ideas and plans and we hope that each of you who was inspired by Phoebe, each of you who also grieves for our sweet Phoebe will help us turn our grief into something good. I know Phoebe would have wanted us to make it okay. 

I wish so much that we were able to hold Phoebe longer, to hear her voice, to see her grow up. I know she would have been amazing and I will always wonder what she could have done. The time she had with us although too short was and will always be the most beautiful gift, it may have only been 5 years, but for five years, we watched Phoebe grow. For five years, we laughed and loved. For five years, I got to be Phoebe's mom. 

2 comments:

  1. Beautiful. I wish I could have met her. Thinking of your family, still, and am keeping Phoebe's story close.

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  2. I've followed Phoebe's story and your blog for a while now, and Jenny, you have done such an amazing job of sharing her with us. Even though I've never met Phoebe, I have all these memories of her, and all her amazing accomplishments. Thank you for sharing Phoebe, and I look forward to hearing about any new ideas and plans that she's inspired you to take on.

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