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

One month ...

A few people have suggested that I keep writing, so here goes ... I'm going to try. 

Writing about Phoebe started as a way to keep family and friends informed on all that was happening, but then it quickly became something more. For me, it was therapy. Writing helped me to feel like I was doing something, and even if it was just getting words out, I felt useful. I was the story teller and it was a joy to write about Phoebe. I wish I wrote more. I wish I shared more of her wit and personality. I honestly don't know if I can write about grief and what is left now without Phoebe. I think, like before, that it could be therapeutic, but it's sad and personal and unlike before where I shared Phoebe's story - this time it's mostly me. And it's hard. 

It has been one month of missing Phoebe. One month of longing for her with every breath I take. One month of holding on. 

It still feels like a nightmare - it most definitely is a nightmare, but it still feels like one I might wake up from. Despite all that Phoebe had been through and all of her many obstacles, I honestly never thought she would leave us. 

Phoebe's death has opened my eyes to the world around me and I notice things I never did before; probably because I look for Phoebe everywhere. Not the Phoebe I need and want, but a sign, anything that will let me know she is here. The sound of the wind in the trees, sunshine through dark clouds, the hint of a rainbow without a drop of rain, three birds - always three, darting across the sky, the cardinal that visits us often, the sky lit up and painted, the brightest stars - to me they are all Phoebe. Noticing these things reminds me of the light that is still here, and so I hold tight to the belief that she is with me. 

But, just like I feel Phoebe everywhere, everything reminds me of Phoebe. When I venture out of my house I am flooded with memories - places we have been, times we shared, food Phoebe loved, toys she would have wanted this Christmas, songs on the radio she would have loved and danced to, songs she did love and dance to, songs she would have told me to turn up, and others that would have her say, "no Mama, not this one". The empty space in the backseat, the empty seat at the table, our quiet house that was once full of the best kind of noise and chaos. The treasured Christmas ornaments Phoebe made that will forever be handled like they are the most breakable. The Christmas lights. Phoebe loved Christmas lights. Sometimes it feels like torture and it often appears so as it can leave me a mess of tears, but it's a welcome torture because it's all about Phoebe and so, I let the waves wash over me. 

Just as there is comfort in the idea that Phoebe is with us, there is the constant reminder that she's not. She is not here, or not in the way that we need and want her to be, and to long for something, to need something that I will never have again - is impossibly hard. And in many ways, it gets harder with each passing day. 

I used to wonder why people say a child is lost when one dies. I have said this myself many times, but Phoebe is not missing. She is not lost. We don't need to simply look for her in the right place and there she will be. Found. Safe and sound. But then, when I find myself looking for her everywhere, when I search for and long for signs of Phoebe - when I wish to find her in a dream, it seems that in some ways, she is lost. She is lost in a way that I will never find. Or more likely, I am terribly lost, and Phoebe is gone. 

I miss her so much. 

We are taking things as they come and doing what we can to honour Phoebe each day. Sometimes honouring Phoebe means getting up, making coffee, and facing the world. Sometimes it is putting up as many Christmas lights as we have because I know it would make her smile. It always means loving and caring for Mae and as Phoebe would insist, making sure she does her school work. Sometimes it is thinking about what's next. Phoebe would not want us to lay down and give up. She would want us to try. She would want us to live. She would want us to find the joy and happiness instead of the anger and hate, and as hard as this is right now - I will try. Everyday, I will try. 

We are thinking about forming a charitable foundation in memory of Phoebe with the goal being to raise money for childhood cancer research while helping to support families like ours, who need to travel far from home to receive treatment. What happened to Phoebe and how hard she fought, is not okay. It never will be, but maybe we can make it better for someone else. All of this is a dream right now, but one that we hope we can make happen. 

Phoebe fought cancer for five years with outdated medicines. There truly was never an answer although we searched and searched and searched for one. There continues to be very few, if any, real answers that solve relapsed MLL + leukemia - in addition to the too many other childhood cancers for which there is no cure and this needs to change. We truly need to do better and I believe we can. 

If you would like to give a gift of hope this Christmas, in memory of Phoebe, please follow the link below to donate to St.Jude. If you are donating from Canada, you need to reset the country of residence from the US. All funds raised will be directed to Dr.Gruber's lab and infantile leukemia research. 


Thank-you for keeping our family in your thoughts. 

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. 

Monday, December 14, 2015

In memory of Phoebe Rose

Thank-you to everyone who has made a donation in memory of our sweet Phoebe Rose. Giving back to St.Jude and supporting research that will make a difference and give hope to the too many babies diagnosed with this terrible disease and their families means so much to us. We know Phoebe would want us to try to make it okay - thank-you for helping us do this.

Please consider giving a gift of hope this Christmas by making a donation. We need a cure. 


Thursday, December 3, 2015

We are still here. Making our way through each day without Phoebe is hard, painful, sometimes it feels impossible and still none of these words even begin to describe it, but that is all I have right now. We get caught up in the busyness of the day, and there are moments in which we feel okay, but then the waves come crashing in. How can it be that Phoebe is gone? How can it be over 2 weeks since we last heard her little voice? We long to hold her. To see her smile and hear her laugh. To just have more of her. We watch a lot of Phoebe videos and look at pictures. Mae asks to do this before bed and I am grateful to watch and remember all those times we laughed. Mae will often say - "we had a lot of fun together, me and my Phoebe".

Mae started school on Wednesday and although some tears were shed on the first day (by all of us), she is happy to be back. Seeing her smile and hearing about her day warms my heart. Listening to Mae talk about how they spoke about Phoebe on the first day and the beautiful and warm welcome she received was just what we needed. We are so grateful for the love, open arms and support that Mae and our family continues to receive from Manor Park. 

We are often reminded of how loved Phoebe is or how she is remembered and honoured. We appreciate each comment, message, card, and act of kindness. It means so much to us to hear Phoebe's name and to know how she reached you, inspired you, or simply made you smile. Thank-you for sharing this with us. She does this for us and so much more. 

We would also like to thank the many people who have been making sure we are well fed. We are overwhelmed in the best way by your kindness. We wish we could thank you all in person and hopefully one day we can. Please know that we are so grateful for this support. 

Thank-you to Dave and the staff at the Empire Grill for generously hosting Phoebe's reception. Thank-you to Kinki for making Phoebe's favourite sushi, to Uncle Scot for making all of Phoebe's other favourites, to the Frasers of Fraser's Cafe for the beautiful and delicious food, and to Jacobsens and Wolf and Ada's for contributing delicious deserts. Thank-you to Sue Krueger for the beautiful and perfect flowers and arrangement for Phoebe. We know our foodie Phoebe would have loved all of this. Thank-you to family and friends for helping to organize everything and basically holding us together. 

We are taking things one day at a time - missing our sweet Phoebe so much. In the spirit of Phoebe and following her lead we laugh as often as we can and we do our best. We take nothing for granted. In memory of Phoebe we will continue to shout it from the rooftops for children with cancer - our shout may be more of a whimper at first, but we hope our voices will be heard. We know Phoebe would want us to make this okay. 

We love you Phoebe Rose.