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, November 14, 2011

Words to live by ...

Almost four months ago, after Phoebe's relapse, Jon and I sat together, tears streaming down our faces, and listened as doctors told us to take Phoebe home, to keep her comfortable.  That there was no hope.  That our journey was coming to an end.  A month later, more doctors, this time with a glimmer of hope and a wonderful spark of determination, told us that it would be difficult, that standard treatment would not cure Phoebe.  That it was time to think outside the box.  The help of these doctors, a lot of luck, determination, perserverence and faith brought us to St. Jude and today we sat in a room with an optimistic and confident doctor who recognized and commented on how far Phoebe has come, on the odds she has courageously beaten down.  And his focus on the cure never wavered, often saying "when we cure Phoebe", not if.  When.   Amazing how one word changes everything.  

Yesterday while out for a walk we ran into a man who looked to be down on his luck.  His car had broken down .  Although we were unable to help him,  he seemed determined to talk with us and give us a message.  Looking down briefly at Phoebe he said, "I don't know what you are going through, and what you are trying to do, but believe it. Imagine it. Think of it as if it has already happened and it will be".  A stranger on the street, whose eyes never left mine and whose words have echoed in my mind ever since.  Believe it.   It will be.  Words to live by.

And so after many tests, Phoebe's bone marrow has shown to be negative for any sign of leukemia or the multi-lineage leukemia gene and her chimerism is still 100% donor cells.  Her transplant is scheduled for Dec. 1st and 2nd and it will be an infusion of my stem cells, unfiltered so that it includes all of the cells that will work to fight against any leftover Leukemia.  There is an incredible amount of science behind this transplant,  great minds have been and are hard at work and I don't know if I will ever completely understand it.  I know that it is different from her first transplant, and that it has shown to be very effective in high risk patients like Phoebe.  I also know that she is in a good place, she is in a good remission and we are moving forward.  Phoebe has done what many thought to be impossible, and although our road is far from being over,  I have so much hope that at times I feel like it is hard to contain.

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