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.

Saturday, December 21, 2013

'Tis the Season

Phoebe is doing well and on her last visit to CHEO, all looked good. Her blood work is back to her normal, we lived through another five days of steroids, and if all goes well, we will not return to the hospital until after Christmas.

In the meantime, Phoebe has been loving life. She has checked a few more things off of her list of firsts and we are all just relieved and happy to be cruising towards 2014 without the chaos and heart ache that filled our days last year.

The events of this time last year and the second relapse that seemed to come out of nowhere, are still very close in our thoughts. It is like our family experienced a trauma, and although most of us have no physical scars or obvious wounds, we hurt and we need to heal. It is stressful and overwhelming and difficult to think about how quickly our lives were turned upside down and the likelihood that it could happen again. This is our year, our year to heal and to make holiday memories that don't include the hospital; memories that aren't grounded in fear.

Lately Mae has been asking a lot of questions about Phoebe's illness and talking about the things that she remembers. It is enough to break my heart over and over again. She mentions Phoebe being really sick. She talks about spending time in the hospital. She asks if there will be a time when Phoebe won't have to have pokes or visits to the hospital. She cries and tells me that she doesn't want anything bad to happen. It is heart breaking, there is no other way to describe it, and I wish so much that she didn't have these worries or fears. We may be on a smooth path and doing well, but the fears and memories of what was and what could have been never really go away. For any of us.

The many families we have met throughout this journey, families who are spending their Christmas without precious loved ones, or spending the holidays in the hospital, are never far from my thoughts. We are thankful and blessed to be together and here and to do simple things like watch Mae and Phoebe decorate the tree for the first time. This is a memory that I will always hold close. Phoebe telling Mae very matter-of-fact that it is "her first tree, you know" and Mae telling her about the other trees we have had. Jon lifting them both up to put the angel on top. I never really realized how truly special moments like these are until we didn't have them. Each moment is a gift. 

In other Phoebe news, she is still in love with Santa and she has revised and asked that we rewrite her letter to Santa almost daily. The most recent revision was done because "my daddy needs slippers. Me and he really needs them. Write it to Santa". Always thinking of others, that's our girl. 

We are so excited to watch Mae and Phoebe experience more firsts together, as it should be, this Christmas.

Merry Christmas! 

On New Year's Day, Phoebe's crazy and wonderful Dad will be jumping in to the frozen Ottawa River to raise awareness for childhood cancer. He is doing this in honour of Phoebe and the many friends we have met on this journey and he is also raising money for pediatric oncology programs and research in Canada via the Sears Foundation. Jumping into the frozen river in minus many degrees below zero weather seems a bit nuts to me, but when I asked Jon if he was sure he wanted to do this he said - "it is nothing compared to what Phoebe goes through". And then he added "I'm going to do it in my underwear". Go Jon go.

If you would like to learn more, come out to cheer, or donate, please visit this link.

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