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, May 2, 2012
Home sweet home ...
We are home. Sweet, sweet home. Our journey home and the packing that it took to get us out of the Target House took up two of the most stressful days I have probably ever spent. So much stuff accumulated, so many wonderful friendships made, and so little time to really say good bye. Thankfully my mum flew down to Memphis to help. I really don't know what I would have done, or the state I would have been in when I arrived at the airport, were it not for her. It was a very stressful and very busy couple of days ... but we are home. Phoebe and Mae were both very good on the flight and they were both (as was I), so excited to see their Daddy.
We had a wonderful greeting at the airport, complete with cheers, signs, tears, shouts of "Daddy" from both Phoebe and Mae, and much to Phoebe's delight, balloons. It was a wonderful and long awaited welcome home.
To make our home coming all the more wonderful, Phoebe's doctor called as Jon was leaving for the airport to tell him that the chimerism results were in early and Phoebe still has 100% donor cells. They also ran a lot of viral tests, one of which had been positive earlier but with very few copies, and this week all are negative. Our doctor explained that this is a sign that Phoebe's new immune system is getting stronger. And great news to come home to.
Tomorrow we will head to Toronto for some Friday morning appointments and blood work at Sick Kids. We are excited to see Phoebe's doctors again, to share with them the little girl that is all grown up and walking, and we are hoping for a good and non-eventful day.
While being home is truly wonderful, it comes with a fair number of challenges. It is frightening to be away from the comfort zone that is St. Jude. Phoebe's chimerisms will now be checked monthly instead of weekly and her blood work once a week instead of twice. It is good as we are taking steps forward and away from all things cancer, but also so very frightening to not be constantly aware of what is going on inside of her body. I am however, going to take the advice of a very strong woman, a Mama to another baby who is fighting this terrible disease - I am going to allow myself to step away from this world of cancer and to enjoy life at home with my beautiful and complete family. To rejoice in the fact that we are together, that Phoebe is thriving, and that we have many, many days to look forward to. I am thankful and happy and I am going to allow myself to be just a little bit more normal.