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, April 28, 2014

Noisy and hopeful

We have the results of Phoebe's bone marrow tests and they are a bit complicated.

The minimal residual disease test, that looks for leukemia at a very low level, is negative. This is good news. What makes it complicated is that the chimerism test, that looks at the DNA of the cells came back at 99% donor 2 (my cells), 1% noise/lab error/possibly Phoebe's cells. 

The chimerism test is not as sensitive as the MRD test so it doesn't make a lot of sense for it to be positive when the MRD is negative. Because of this, the doctors at St.Jude think it is a mistake but they can't completely rule out the result as some of this background noise lines up with Phoebe's genetic markers. 

So we will test again in 6 weeks rather than 3 months.

Phoebe's doctor explained that some of Phoebe's bone, blood or fat cells could have contaminated the sample but that this is unlikely as it would require a lot of these cells. 1 in 100 (1%) of the cells showed up as this background noise. 

He also explained that it is extremely unlikely that any of Phoebe's non-leukemia healthy cells could have survived all that her body has been through, so to have any of Phoebe's markers show up is worrisome because the only cells of Phoebe's likely to survive are the ones we don't want.  

The MRD test is negative for leukemia though which is reassuring, so rather than focus on the what ifs and what could be, I will focus on that. There will always be worries with Phoebe but after looking at hundreds of thousands of cells, no leukemia was found. None. The rest, this noise, it is just a mistake. 

It is exhausting though, this journey. It is exhausting in ways that I cannot properly explain. We function every day with what has become manageable stress. For us, this stress is normal. It is an always there, manageable because we have felt it for so long, stress, and as long as nothing else happens, we can handle it. 

We try to focus on the positive, and I think we do a good job of this. It is hard to be anything but positive with Phoebe around. She is the most joyful soul. 

But sometimes my mind wanders and races to thoughts of what if and the stress becomes too much. I can't help it. Reality sets in. Phoebe has had so much treatment. We need this to work. We need this to be a lab error. We are running out of options.  And on and on it goes until I force these thoughts out of my mind and imagine a beautiful grown up and feisty Phoebe. She is amazing. 

Infant Leukemia is a monster. When diagnosed within the first few months of life, it carries, at best, a 30% chance of survival. We were told 10-15%. There is no known cure for post transplant relapsed infant leukemia and very few survivors. There have been ZERO advances in treatment or survival rates for this disease in 15 years. We are simply grasping at straws.

None of this is okay. Phoebe's joy and spirit and strong as anything will to live keeps me sane, as does Mae and my belief that Phoebe will be okay, but what nearly breaks me is the lack of attention paid to treat and cure cancers like Phoebe's. The lack of options. We deserve better than leftover adult chemotherapies and pennies. We deserve a real chance. 

Please keep Phoebe in your thoughts and prayers. She is amazing and cancer free and this worry and noise will soon be behind us. 

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