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 25, 2014

Home again

We are home and happy to be here despite not knowing how long we will be home for or where we are off to next. Home is the best place to be and it is where Phoebe and Mae are happiest. We also came home to our grass cut, our fridge stocked with the essentials, our car cleaned, and our basement organized - we were exhausted so this was a welcome and beautiful sight. 

We had a visit to CHEO today. Phoebe's blood work looks okay. She is almost neutropenic but her platelets and hemoglobin are on the rise. She is keeping us on our toes and it is hard to tell what is going on in her little body. Her oxygen saturation level is normal - this was an issue with the pneumonia in Denver so is good news. Her liver and kidneys look good. She looks good, albeit a bit tired. She should be tired though as she has been up past midnight for the past two nights. Up past midnight laughing and talking about what she wants to do for her birthday, for Halloween, for Christmas - she has it all planned out.

Go Phoebe go. 

Our next visit to CHEO will be Tuesday for a bone marrow aspiration. The results of this test will give us a sense of what is going on, and they will hopefully lead to a plan. We have decided that if the results show less disease, we would like to pursue options that will keep Phoebe in remission rather than wait for relapse. If the results show more disease, we will simply wait until there is enough for the trial and hope we can still get in. 

We are happy to have options. Three years ago almost to the day, is when Phoebe relapsed for the first time. I will never forget that day as it holds so many of the reasons why we keep fighting. We have had 3 wonderful years when all statistics and data suggested we would have none. Of course we will keep fighting for more. We have learned that there is value in research and innovative treatment and these treatments have given us the most precious gift of time. 

To people looking in from outside, our life seems messy and chaotic and stressful, but to us, right now, it is whole. It is all of those other things too but we are together and complete, so it is good. 

Maybe this next fight will give us another three years. Maybe it will give us a lifetime. We certainly hope for a lifetime. 

"Is there any medicine in this whole world that will help Phoebe? There should be". Mae Doull-Hoffman 

Yes, there should. And we have to believe there is.