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, February 27, 2013

Day eight

Today is day eight.

This morning, Phoebe was once again sedated and once again, the team of doctors and nurses in radiation oncology proved to be simply wonderful. We have met a lot of anesthesiologists in our time, and to be completely honest, they have never been our favorite doctors. The doctor we have been lucky to have for all but one of these past eight days of sedation at St.Jude is amazing. They all are, but he especially has gotten to know Phoebe. He greets her with a warm and beautiful welcome. Takes time to play with her. He holds her hand as she goes to sleep. He tells her that she is loved and that she is special. And although his job is to put Phoebe to sleep and help her to wake up safely, he relishes the time that he sees her awake.

Pure and simple, these people care for her with so much kindness and she loves them.

This morning, Phoebe put her little head down on the "pillow" that is used for sedation. A round donut type of foam that she also calls a hat and puts on her baby's head. Without being prompted, she asked to lay down and hugged her baby doll tight as the medicine was given. I felt like the odd person out in the room full of nurses and doctors and even more so as Phoebe reached out to hold this anesthesiologist's hand, before she drifted off to sleep. "She always squeezes my hand so tight. She is special", he said with so much warmth and love in his voice. Then I left the room to the sounds of all of these people loving and caring for my child. They have made these soon to be ten days of radiation and sedation bearable. More than bearable, they have created memories for us and for Phoebe.

As I write this, I am sitting in the waiting room, waiting for Phoebe to wake up. I am surrounded by parents and their children, all of whom are waiting to receive radiation in one form or another. Beside me is a beautiful little boy who has an inoperable brain tumor. DIPG. A form of childhood cancer for which there is no cure. His mother cradles his head in her lap as we chat about life and fairly typical childhood stuff. I admire her very much.

The ability to courageously and solidly put one foot in front of the other when you are unsure and fearful of what lies ahead is admirable.

Life around here is celebrated as best as it can be.

Something else worthy of celebration are the consistently perfect blood chimerism tests that Phoebe has had since her arrival here at St.Jude. And to add to this, the fact that Friday will be our last session of radiation and also our last dose of steroids. We also had our (hopefully) last dose of chemotherapy on Monday.

What happens next will depend on what the results of Phoebe's bone marrow tests show and those tests will happen in a couple of weeks.

In the meantime ...

go Phoebe go ...

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