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.

Saturday, November 12, 2011


Phoebe's bone marrow test went well, and unlike the first bone marrow test that was done when we first arrived, they were able to get a good sample with many recovering cells. The initial results show that Phoebe is in morphological remission. Under a microscope, zero leukemia cells are seen. They are looking deeper and running more tests but these results are encouraging.  Yesterday we also learned results of a chimerism test. This is the test that is run weekly to determine the make up of Phoebe's blood; because she has had a transplant and an infusion of my NK cells it is complicated. Last week, 14% of Phoebe's blood was made up of her cells, 78% were from her original donor, and 8 % were mine.  Because Phoebe's blood was once full of Leukemia cells, the hope is for her to have no cells of her own.  Yesterday I learned the results of the latest chimerism and they are 100% donor cells.  Phoebe has never had 100% donor cells, even after her first transplant the most she had was 95%, so this news is wonderful.

Despite this latest result, Phoebe will still need a second transplant.  I think this says a lot for the aggressive nature of her disease.  As we have learned from the past, Leukemia cells like to hide, stay hidden, and creep up when least expected. Like they did in Phoebe's case after 8 months of intense chemotherapy and a bone marrow transplant.  This disease is not kind or gentle, or forgiving, and it needs to be treated aggressively.  I don't think the fear of relapse will ever go away, but we believe.  We have to. We believe in Phoebe, in our doctors, and in the possibility of a cure.  And everyday it seems that we are getting closer.

We have a meeting with Phoebe's doctor on Monday to discuss the transplant procedure, have our many questions answered and hopefully learn more results from bone marrow tests.  I am hoping that his answers will bring me comfort and peace before we start the process of a second transplant, but I have come to realize that these doctors and what they are doing is the best that there is for Phoebe, and there comes a point when I have to let go of control and have faith in their knowledge and ability.  And I do. 

In the meantime, Phoebe continues to do her thing.  She loves to play with Mae and is making great strides developmentally.  She is also growing.  Since our arrival at St. Jude, she has grown 2 and a half centimeters.  Go Phoebe go ...

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