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, August 15, 2011
Two visit Phoebe
It would seem that behind the scenes, many wheels are turning and brilliant minds are working to help to find further treatment options for Phoebe. Today we had a much anticipated phone call from Sick Kids. The doctor I spoke to, among many other things, is working to bring new drugs and protocols to Canada for treatment of relapsed Leukemia and other cancers. Working to help people like Phoebe. He explained that there are a few clinical trials that he thinks Phoebe can benefit from if she meets all of the eligibility criteria, two are close to home in Toronto and one is in Atlanta. On first glance, she meets most if not all of the criteria, and further testing has to be done to ensure that she can in fact be enrolled. I was relieved to speak to another doctor from Sick Kids, who shares our belief in the fact that all is not lost. There is hope.
The news of Phoebe's relapse was devastating, perhaps worse than hearing the original diagnosis because we were also faced with the fact that the many, many months of toxic chemotherapy did nothing but temporarily keep the cancer at bay. Together, Jon and I decided to try whatever treatment options are available, as although they may be experimental, we think that even if we are faced with a small chance for success, someone has to be that small chance. Why not Phoebe? Were it not for our determined doctor from Sick Kids, who listened to our concerns, searched for further options, and believed that yes, it is worthwhile to try once again to fight Phoebe's cancer, I don't know where we would be.
I titled this blog post 'two visit Phoebe', after a comment made by another one of Phoebe's wonderful doctors. This doctor commented that with Phoebe, things are always changing. She would see her in the morning, only to discover a completely different Phoebe in the afternoon. I think this is also true of Phoebe's journey. What appears to be impossible one day proves very much the opposite the next. We will potentially be going to Toronto this week for testing to ensure that Phoebe meets all of the criteria for treatment and to hopefully begin the process of enrolling her in one of these clinical trials. As we have come to understand, anything is possible.
As for Phoebe, she is smiling, starting to "scooch" across the floor in search of toys, and eating. We have discovered that she eats much better when presented with real food that is rich in flavour - preferably garlic. Among her favourites are lasagna, pesto, pizza, humus and blueberry pie (as she is enjoying in the picture). Her visits to CHEO for blood work are still frequent, as are her platelet transfusions, and the cancer is never far from our minds. Needless to say, we are anxious to start this next part of her journey.
We are so very grateful to all of the people out in the world sending love, prayers, hope and strength to us and Phoebe. Thank-you.