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, February 11, 2013

Mighty mighty Phoebe

We are in the business of surprising doctors. There are the not so nice surprises that come with unexpected news of relapse, but then there are the surprises that are good. So very good.

Like today.

Today while we were meeting with Phoebe's doctor to discuss the few issues we have been dealing with lately, issues like the enlarged bladder which is now normal, the constipation - also fixed, and the long awaited radiation simulation that finally was completed today after three attempted tries and a total of nine unnecessary hours of sedation last week. After we had discussed all of this, we asked about bone marrow results. Those long awaited and so very important results.

Our nurse practitioner went to see if the results were in and came back in the room to give them to Phoebe's doctor. He was obviously impressed and happy and as I always say - happy doctors are a very good thing. He was expecting Phoebe to have 1-2% leukemia in her bone marrow, but these results are much better.

Phoebe's bone marrow, while not clear of leukemia is showing a very low level of disease. Her minimal residual disease is 0.01%.There was joy in that small room when these results were read. Pure joy and hope.

These beautiful results are thought to be the product of chemo together with a very determined and strong immune system. Never underestimate the power of Phoebe Rose, together with her Mama's angry cells. Taking back what's ours.

Our doctor explained that right now 1 in 10,000 cells are leukemia and to qualify for the NK trial, Phoebe would need 1 in 20. We are hoping this tiny amount will continue to go down, not up, and so the trial is not being considered as an option right now. But as he said today we have other options to ensure that this number becomes zero. And having options is good.

We still have only pieces of a plan but we are moving forward and realize that the plan will depend on Phoebe and what happens after this round of chemo and radiation. Perhaps the plan will simply be to return home after this next round of radiation and chemo. To return home to enjoy life. That is to life, without cancer.

We can always hope.

Go, Phoebe go!


  1. Hey! we've never met, but my name is Nathalie, and I'm a really close friend to the Ernst family. Brittany keeps me updated about Phibi and I just wanted to say that that is great news! I've been praying for her everyday! Brittany showed me a picture of her the other day, and oh my! SHE IS ADORABLE! I hope that things continue to improve! God bless! (By the way, I'm bad with computers and accidentally sent you an e-mail! Ahhahaha :P)

  2. Wonderful wonderful news! Will continue to keep all of you in my prayers!
    xo Linda Gary's Mom