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.

Friday, May 17, 2013

All is not lost

All is not lost. Of course it's not. Today is a new and better day.

St.Jude looked at the most recent MRI images and compared them to the last scan. They are exactly the same. No lesion, or anything to worry about. Our doctor at CHEO has reassured me of this many times, but knowing that there has been no change, that the dreaded mass is still gone, is a good feeling. Why the radiologist at CHEO chose the words "mass" and "lesion" to describe no change is beyond me. Words matter and should be chosen very carefully when dealing with cancer. 

The bone marrow results are 1 in 100,000 cells. So a very small amount, an amount that on some methods of testing disease (measures used by CHEO for example) is actually undetectable and an amount that is also below what is considered the reliable range measured by this test. It is showing to be there and that is devastating, but it could be a lot worse. Phoebe's doctors have said that at this point, it could go either way. Up or down. It could be negative again with the next test and it could also have been a testing error. I will focus on that, that it will be negative on the next test.

The plan then, is to continue with maintenance chemo and repeat the bone marrow test in six weeks. Today Phoebe's blood work reflects the chemo that she has received. It is not normal and most of her counts are low, so we need to be extra careful with her so that she stays well.

Right now, with this low and sometimes, undetectable, level of disease, Phoebe does not qualify for any clinical trials. If it goes up, we will go there, but we are hopeful that we will have more time before we need to pursue further treatment.

When I look at Miss Phoebe, she is not a sick child. She is feisty and joyful and often incredibly full of energy. She is our leader and we will keep following her.

Thank-you all for the many messages of hope that we have received - there is so much love, hope and prayer surrounding Phoebe and we are very grateful for this.

1 comment:

  1. Keep on keeping on! Praying for negative results.