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.
Wednesday, December 26, 2012
Christmas time has come and gone. Phoebe was able to get out of the hospital during the day on Christmas Eve and day and so although it was not the Christmas I was imagining, it was spent together and for that we were blessed.
We opened our gifts in the comfort of our home, watched as Mae and Phoebe played with their new toys, and fought over a beautiful new Barbie Fiat. We had a delicious home cooked dinner delivered to us, we pulled our Christmas crackers, most of us wore the paper hats, and we clinked glass to plastic and wished for brighter days ahead. It was as perfect as it could be under the circumstances.
Phoebe is very fond of Santa, so much more than Mae was at this age, and so when Santa visited the children at CHEO on Christmas morning she was very excited. She reached for him as he approached, and with tears in her eyes, said "Santa!" He picked her up and she snuggled into his beard, all the while saying Santa over and over again. I think she thought that Santa would take her away from all of this and when he left without her, there were a lot of tears. I think Mae too wished that Santa was as magical as he is in her imagination.
It is so important to all of us to have Phoebe home, but I think that Mae misses the life she came to know with her best friend and sister the most. She is having a difficult time with all that comes with life in the hospital and she will often cry when she leaves Phoebe in the hospital. As we make our daily rounds around and around the ward in the wagon, she will point to rooms that are empty and say "he got to go home". At night time when she goes to sleep she wishes for "Phoebe to come home, and for her to get better and to never have to go back to the hospital". It is enough to break my heart and wonder why all of this is happening to our family.
Today Phoebe had another dose of chemotherapy, methotrexate, and the plan is to repeat this together with one other chemotherapy, every 10 days as a way to manage her disease while we wait to hear about other options. She has an ultrasound once a week to check in on the mass, the last showing that it had shrunk, but was still very much there. Her belly and her leg, however, are back to normal and are no longer swollen as they were when and after we were admitted. And her blood work continues to look good, apart from some electrolyte imbalances that we are managing.
I heard today that the bone marrow that was sent to St.Jude came back with a chimerism of 91% donor 2 cells (I am donor 2). We were already aware that Phoebe's bone marrow was affected, so this is not "news", however it was hard to hear. Perhaps it is because I have gotten so used to hearing news of 100% donor, or maybe it is because today I also decided I needed to cancel our flights to Memphis; flights that were supposed to take us there for Phoebe's one year post transplant check up, or maybe because it is just one more thing, one more piece of bad news, that makes it all especially difficult.
Regardless of what all of the tests show and the reality of what is going on inside Phoebe's body, she is doing well. She is running laps around the oncology ward, eating, drinking, playing, laughing and living life as full as she can right now - she is limited only by her IV pole and the limited areas to play here at CHEO. No one has told her that she is sick and to look at her you would probably not be able to tell. She is a bundle of joy and laughter and she makes it wonderfully easy to follow her lead.
Thank you to the CHEO Santa and all of the volunteers and child life who work hard to put a smile on the faces of children and families who find themselves in the hospital over Christmas. You truly made a difference in our day and helped us to create wonderful and lasting memories.
We learned something this year, or rather we were reminded of this because we have always known it to be true. We learned that it is all about time. It is about how you spend it and who you spend it with. Where you spend it, well that is just gravy.