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.

Sunday, April 28, 2013

Amazing people

On Friday, Phoebe had a great visit to CHEO's medical day unit. It was short and it was sweet because despite the chemo she has been receiving, her blood work all looks normal. Wonderfully normal. Her hemoglobin has even climbed up a few notches and while still a bit on the low side, is great for someone like Phoebe. Her platelets are great, and her bone marrow is working hard to pump out all kinds of healthy and strong cells. I looked at the blood work and one word came to mind. Robust. The word her doctor at St.Jude used to use to describe Phoebe's cells and immune system. Robust. I like this word a lot so I try to use it as often as I can.

Today we had a visit from CTV news. They have been following Phoebe's story and would like to feature her in their "amazing people" series. This warms my heart because of course I also agree that Phoebe is amazing - she is incredible, unstoppable and she inspires us everyday, but her story is bigger and greater than her two year old self. It is made rich by the people that we have met on this very long journey. These people who have helped her to be the girl that she is.

And so, this blog post is for them. These people who have greatly inspired us, who have held us up during those very dark days. Who have celebrated victories with us and shared our heart ache and disappointment. The people who together have saved Phoebe's life. Who have held our hand and offered a shoulder to lean on. The people who have pulled up a chair beside us and listened. Who work behind the scenes, searching for cures and answers. Those working to raise awareness and funds for life saving pediatric cancer research. The advocates. And our doctors who have done these things and more, they have sacrificed time with their own families to make sure that we have more time together.

Phoebe is blessed with so many wonderful doctors. There are her doctors at CHEO who were with us in the very beginning and who are still with us. Her primary oncologist at CHEO works closely and very well with her doctor in Toronto and Memphis to make sure that Phoebe has the best care. She is amazing. Phoebe's oncologist at SickKids is a person for whom there is not enough good that can be said. We cannot say thank-you enough to this man, who in so many ways, has saved Phoebe's life. He was the doctor who we turned to after Phoebe's first relapse and above all else he gave us hope when all seemed lost. He is an amazing person and doctor and is doing incredible work at SickKids. This work has benefited Phoebe, but is also benefiting countless children. He is responsible for bringing to Canada and SickKids the clinical trial that Phoebe was first treated with, and in addition to this, he is improving options for Canadian children who have exhausted all conventional ones. His hope is that in the future, Canadian children will not have to travel so far away from home for life saving and innovative treatment and I believe that he will make this happen. He is an excellent doctor and we are lucky to know him and have him on our "team". Today, although Phoebe is doing very well and is without disease, he continues to explore options with Phoebe in mind, he is working on contingency plans, just in case. Simply and without a doubt, he is amazing.

Phoebe's transplant doctor at SickKids is the person who first suggested that we go to St.Jude for treatment, he was always so steady in his approach and thinking. He would say to us, when we were desperate to save our girl, that we needed something "novel" and innovative. He pushed for this type of treatment rather than giving more of the same and when I worried about what to expect at St. Jude he said to me - "just go. This is what Phoebe needs. Ask your questions when you get there". And he was right.

And then once at St.Jude - we were greeted by so many amazing people. Doctors, nurses, nurse practitioners, physical therapists, radiation therapists - all amazing and all part of this story. Together they treated Phoebe as a whole person, helping her to walk, talk, eat, and live her life while also treating her disease. Phoebe's primary physician at St.Jude has done so much for our family. In fact, each of these people and doctors deserves their own blog post and even then, I would still have more to say. They saved her life and upon learning of this most recent relapse, her primary transplant physician stayed in touch with us and our doctors at home, and never gave up on Phoebe or on searching for something to help her. He understood the stress and heart ache that we were feeling and was always there to answer our questions. He is also incredibly optimistic and hopeful and at times it seemed like he treated Phoebe like she was his own. He also continues to search for options, just in case Phoebe may need them and knowing that we will probably never have to fight like we once did for treatment for Phoebe, is an incredible and heartwarming feeling.

I wish everyone could experience the care that we have had for Phoebe. Our journey and our situation has been far from ideal, but it has been made wonderful in many ways by the care that we have received. To know with all certainty that everything that can be done to save your child is, makes this sometimes unbearable life better. Without all of these people, these heroes, who I know work so hard and sometimes around the clock, Phoebe would not be here. We will forever be grateful for them.

Knowing them is why I believe that there will be a cure for this disease.

And then there is our community, and the amazing people who fill it. Those who have organized events and fundraisers, who have added Phoebe to prayer lists, sent messages of support and love, the young people who have made wishes for Phoebe to grow up big and strong. All of these people have made this journey easier. Our community has lifted us up, on days when all seemed impossible. Without this support our family would not have been able to travel this road together.

Thank-you, from the bottom of our hearts, to all of the amazing people in our lives.

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