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, August 19, 2011

A long weekend

The results of Phoebe's blood tests are in and they show that she does have the CD22 expression on her Leukemia cells, so she is eligible for the clinical trial.  However, we are still waiting to see if she will actually be enrolled.  What makes this situation complicated and unfortunate is that the one spot left in the trial, is needed by Phoebe and one other patient.  The doctors are going to discuss both patients on Monday and make a decision about who will benefit most from the treatment.  I am sure that many factors are involved in their decision making process, and I know that they will choose well.  Because this is a phase 1 and experimental drug, only a handful of patients can be used - I guess they want to make sure that the treatment is effective before offering it to everyone.  Knowing all of this doesn't make anything easier.  Somewhere in the world, there are other parents hoping for the same thing that we are hoping for,  praying for a child who is also very sick and, like Phoebe, in desperate need of this treatment.  Nothing about this is easy.

Our doctor has told us that if Phoebe is not chosen for the trial, there are other options for treatment and although he hopes we won't need to discuss them, he has ideas and plans for next steps.  There are a few other trials that can help Phoebe but they are not available right now.  We don't know how long Phoebe can wait for treatment, and we are afraid of waiting too long.  Today Phoebe's blood work showed that her white blood cell count is 20.  This is good news, as it is the lowest it has been since she relapsed, but it is being controlled by chemotherapy, and we were reminded today that this drug is only a temporary solution as the cancer will eventually break through its barrier.  I got the impression from our doctor today that things are not as she would have expected.  She commented on how "surprised" all of the doctors are at how well Phoebe is doing despite all that is going on inside of her, and how her white blood cell count is still very much under control - more than 3 weeks after her relapse.  Although we are happy that Phoebe's white cell count is lower, we are aware of how terribly fragile this situation is and are anxious to start the next phase of treatment.  Whatever that may be.

This weekend will be the first in 3 weeks that we don't have any plans to visit CHEO for blood work and transfusions.  Phoebe had a platelet and a red blood cell transfusion today.   We will enjoy our time together at home, but we will also be anxiously awaiting Monday's news.  It will be a long weekend. 

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