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.

Friday, July 8, 2011

Out Patient

Phoebe has  been at home with us in Toronto for the past 3 days and it is so wonderful.  Following her first night at home we had a visit from community nursing, to assess Phoebe and care for her PICC line.  Mae overheard me tell Jon that the nurses were coming, and she got very upset.  In a panic, she told me that "Phoebe is all better, she doesn't have to go back to the hospital" and then, as she continued to become even more upset, she pleaded with us to "please don't bring Phoebe back to the hospital, she's all better".  It broke my heart to see her so upset and worried, and I eventually convinced her that the nurses were visiting only because Phoebe wasn't going to be going to the hospital.

Mae is two and a half and incredibly resilient.  We have picked up and moved her to a new city, her sister has been living apart from her for almost a year, and she has seen her parents together a handful of times in the past 9 months.  Today I realized that despite how happy and joyful she is, all of this has had a real effect on her also.  She was so scared and worried that the life that she had just gotten back, her life with her baby sister and both parents, was going to be taken away from her again.

Yesterday I took Phoebe to the out patient clinic at Sick Kids.  She had her blood tested and her platelets climbed up a few counts so no transfusions were needed.  It has now been 9 days without a blood transfusion which is a wonderful sign that Phoebe's new cells are continuing to work their magic.  The out patient clinic, or the Sears Cancer Clinic, is a huge completely renovated clinic and is unlike anything I have ever seen.  It reminded me of the waiting area at the airport.  It is a huge and bright open space with tables and chairs, but unlike the airport it has toys, computers, flat screen TV's and many, many children with Cancer.  Above the reception area there is a sign that directs children who are there for "express chemo", almost as if the children are figures on an assembly line, waiting to receive their chemo and have their blood tested.  It is very efficient as the clinic will see approximately 120 kids a day, but also unbelievable.  It is a different world, and one that I don't think many people are aware exists.  When we were at CHEO it seemed that when one family was sent home, another child, newly diagnosed, occupied their room.  Beautiful and incredibly brave children fighting terrible cancers while also just being kids.  Laughing, playing hockey in the hallways, and riding tricyles around the ward. 

In a perfect world, no child should have to spend years of their life in hospital, but as it would seem, the world is not perfect.  Instead, I hope that a cause and a cure is found, that the number of children diagnosed with cancer each year begins to decrease and that more funds are directed to life saving pediatric and infant Cancer research.  Seems like ambitious hopes but look how far we have come. 

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