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, March 20, 2012
Big sister Mae
Mae was 20 months old when Phoebe was diagnosed with cancer. Close to the age that Phoebe is now. She understood that I was having a baby, and even helped to choose her sister's name. Learning to say "baby Phoebe" very sweetly and often in the final months of my pregnancy. She was aware, excited and eager to welcome Phoebe into the world.
Phoebe was a big, beautiful and very calm baby during her first month of life and life with both of my girls at home was wonderful. Thinking back to it now, it is like it never happened. Like it was a dream. Month two of Phoebe's life would see us move from our small house to a much larger one. We were happy but very exhausted and stressed. Phoebe was fussy and we were desparately trying to figure her tiny self out, like many parents do with a new baby. I remember telling friends and family when they commented on her healthy size and appearance that she was fragile. There was something about Phoebe that no one else could see. I knew in my heart that something was wrong.
Just as I knew this in my heart, when I heard the diagnosis, the news of relapse, and what at times was considered her very small chance for survival, I knew that she would be okay. I have never stopped believing, even in the face of complete chaos and heartache, that Phoebe would be cured. Each day we cling to this hope and this belief in what was once considered almost impossible. Phoebe's cure.
The wonderfully full and happy first year at home with my children, the year that I had been imagining, expecting and looking forward to when I was waiting for Phoebe's arrival was not as it should have been. Instead our family bonded and found joy in a small hospital room. The life that Mae knew with Phoebe, Jon and I at home was no longer. Mae spent fifteen months living with only one parent at a time, missing her mum or her dad and her Phoebe. She has now been away from her "home" for close to a year. She has seen Phoebe in pain, in the hospital, watched as she is given many medications. Through all of this upheaval she has thrived and I am so proud of her. She is a joy. A pure joy to be around and to watch in action. She loves, laughs, plays and welcomes new children to the playground with enthusiam. She is smart and creative and kind and everyone she meets, whether they be children her age or staff at the hospital, is a friend. She exudes warmth, happiness and love and I smile just thinking of this.
She is quick to introduce Phoebe, saying proudly to many, "this is my baby sister Phoebe". If she is given a sticker, she asks for one for her Phoebe. She gets regular kisses and hugs from Phoebe. The latest style of hug being the standing up kind, Phoebe leaning into Mae, her head buried in her chest giggling. Giggling and loving this closeness.
Today, Phoebe's blood work looks normal. Wonderfully normal. Her chimerism is 100% donor cells and her liver enzymes are coming down. She is often tired as her body is now adjusting to the steroid wean, but she is working hard to do many new things and everyday brings with it a new trick or food tried.
And now that a life together at home, at our home in Ottawa, seems amazingly within reach, I find myself daydreaming. Daydreaming of picnics and backyard Barbeques, of making our house that we have lived in together as a family of four for only 2 short months, into a home. Of making memories, gardening, riding bikes. Of planting seeds and watching them grow into beautiful flowers and then waiting for those perfect plants to appear the following spring. Watching them grow strong, healthy, and beautiful year after year after year- just like we will our Phoebe Rose and her big sister Mae.