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.

Thursday, June 4, 2015


Phoebe appears to be feeling great. Her doctors and nurses comment on how far she has come, how happy she is, how great she looks. She is gaining weight, eating more by mouth, the fungal lesions are still improving, she has more energy, and each day seems to bring progress. 

I wish so much that Phoebe's test results matched her beautiful and healthy spirit, but they don't. 

Phoebe's bone marrow results are confusing. The MRD test found just 4% leukemia cells. This is more than the .08% from three weeks ago, but still low and manageable. We heard this result first and thought - we can handle 4% - we are still okay. Results of the chimerism test came next and reported 90% Phoebe cells and just 10% donor cells. All of Phoebe's cells express the MLL gene and are cancerous, so this is not good, but it is also hard to be believe considering the other result and Phoebe. These results just don't match Phoebe and I keep expecting someone to call and tell us that they made a mistake. On Friday, when Phoebe's doctor called with the chimerism results she expressed concern that the leukemia would soon break into Phoebe's blood stream - making things harder to control. There are no signs of this, rather Phoebe's labs today show low but stable counts and even some improvement. Phoebe herself appears to be "well" and asymptomatic, but we still worry. We worry all the time and now we worry even more. 

We are dealing with two very aggressive and life threatening diseases. The fungal infection and refractory infant leukemia - both have very limited, if any, effective treatment options and both take far more than are cured. Phoebe is here because she has overcome incredible odds. For the fungal infection, we are continuing with the weekly granulocytes and antifungal drugs and hoping that this is enough. Phoebe needs her own cells to recover but if she really does have only 10% donor cells, I don't know if this is possible. As for leukemia - we have tried almost everything we can try. There is one drug that Phoebe hasn't received and it is low dose and well tolerated, so we are going for it. It is used in the maintenance cycle of leukemia treatment and we are hoping that it can calm the storm and keep things under control. The transplant trial is still on hold and not an option right now, but we will never give up hope that one day, we will get there. 

We will continue to support Phoebe's healing with a good and healthy diet and all the love and hope in the world and we believe that this makes a difference, but the key to all of this is Phoebe. Phoebe is here and more than this, she appears to be thriving in the face of leukemia and this terrible infection. This is what keeps us from completely breaking down and gives us the strength we need to face this day after day. 

We are rechecking Phoebe's bone marrow in a week and a half and hopefully these results will bring clarity and good news. In the meantime, we will continue to take each day as it comes, always hopeful and grateful that the good days far outnumber the bad. 

Go Phoebe go. 


  1. Praying for continued healing and hoping the next test results will give you some clear answers. In the meantime, Go Phobe Girl Go!!