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.
Monday, May 2, 2011
Our 2 week vacation
We are almost at the end of our vacation away from hospital life. Tomorrow we will start the five hour drive to The Hospital for Sick Children in Toronto and begin the preparation for Phoebe's transplant. The past two weeks that we have spent at home have allowed us to see all that we have to look forward to and all that we have missed. Phoebe has spent the majority of this time laughing with her sister and watching her play. Mae telling her: "Phoebe do like this", while she jumps and Phoebe, listening and watching intently - her bright eyes eager to take it all in. She has "scooted" along the floor, excited to grab toys out of reach, and she has tried new foods, rice crackers being a favourite. She watched as her cousins jumped like frogs, sang songs, and made faces, delighted just to see her smile. And Jon and I took many long walks together and happily caught up on the 6 months of life that existed outside of the hospital. Throughout the many months that Phoebe was at CHEO, we would show her photographs and tell her about all of the wonderful things that she would see once she went outside, about all of the things worth fighting for. It is a wonderful thing that Phoebe has now seen many of those things, and knows all about what she has to look forward to.
Today we had our last visit to CHEO before we leave for Toronto. Phoebe had her blood tested, and everything looks good. We found out the results of some of the tests that she had done in preparation for Toronto. Her last bone marrow aspiration shows that her leukemia is still in remission and our doctors think that she is being sent for a transplant in wonderful shape. Apart from her feeding tube, she looks like a happy healthy 8 month old baby.
Earlier in the week, when thinking about what lies ahead for us and Phoebe, my nervousness about the transplant overcame my excitement about completing the first phase of treatment and I began to feel very sad. Sad at the fractured state of my family, and at the fact that my little Phoebe, instead of spending her first year at playgroups and parks, would be in the hospital. Then I thought about the wonderful donor who is ready and waiting to give her his life saving bone marrow on May 13th and I realized how fortunate we are. Although unfortunate to be in this situation, we are so fortunate to be surrounded by so many giving, wonderful and selfless people and lucky to be able to give Phoebe the best treatment for her cancer. And as we are about to embark on part two of Phoebe's journey, I will keep my thoughts focused on that.