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, December 19, 2014

A Christmas Miracle

The sign above the door in the procedure room at St.Jude says:

"If you can dream it, you can do it!" Walt Disney 

Before the bone marrow tests on Thursday, I held Phoebe's hand as she was given what she calls "sleepy medicine", for what could very well have been the 100th time - I have lost count, and then I looked up and saw this message. A sign, I thought. We have big dreams for Phoebe Rose. 

Today, Phoebe's doctor gave us amazing news. The results of Phoebe's bone marrow aspirate and biopsy are MRD negative! Negative for both ALL and AML. After looking for leukemia with the most sensitive tests, they found none. Zero leukemia, just healthy cells. This is quite something and the first words out of my mouth were, "are you crazy?". Not sure where that came from, but in that moment I was so surprised, relieved, amazed and happy. We went into this test feeling a bit broken. We were hoping for less disease, but given how long we have been at this, how much disease was found with the last test, and how we are now fighting AML and ALL - MRD negative seemed too good to be true. 

Instead it is good news and happy doctors. And a Christmas miracle. 

So, we are trying to make it home for a quick Christmas visit with plans to return to St.Jude just before the new year for more appointments. While these results are wonderful and encouraging, Phoebe is not finished. Instead, today she had more of the same chemo that produced these amazing results and she is now a candidate for a third transplant. Going to transplant with a negative MRD is a good thing and something we didn't think was possible, but to be completely honest, we have a very long and treacherous road ahead. Attempting a third transplant is not something that is taken lightly or even possible without a healthy Phoebe and so, a few things need to happen first. Infections need more time to fully heal, Phoebe needs more time to regain strength and weight, and we need to keep putting one foot in front of the other and believing that we will get there. 

Today, rather than focus on what lies ahead and the fear that a third transplant evokes, I will choose hope and I will choose joy. It is time to focus on the good. 

Shout it from the rooftops and kick it to the curb. 

Go Phoebe go. 





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