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, August 18, 2011

Options ...

Back from a quick trip to Toronto.  Phoebe, Jon and I arrived at the clinic at Sick Kids yesterday morning for blood tests and a meeting with the doctor about the clinical trial.  The blood tests are looking to see if Phoebe has a particular expression on her Leukemia cells, because it is this expression that the study drugs targets. We will have the results of the blood test on Friday, at which point we can continue with more testing and begin the process of making sure that Phoebe is ready for the trial.  This will include more blood, bone marrow and spinal fluid tests, and tests of her heart, organs and eyes.  This is to give the doctors a baseline, an idea of how well Phoebe is and also to further ensure that she is eligible for the trial.

The meeting yesterday was different.  It was the first meeting since Phoebe's relapse that we left feeling hopeful.  While we are very aware of how aggressive Phoebe's cancer is and how difficult it may be to treat and cure, we talked at length with this doctor about options.  About trials and new drugs that are promising and on their way to Canada, things that can help Phoebe once she is in remission.  Options.  The trial that we are hoping she is eligible for he explained, has shown complete response in some patients.  This means that after treatment with this particular drug, some patients were seen to be in remission.  If Phoebe is eligible for this trial, it will be a first step towards further treatment, not a cure.  If it works to get Phoebe successfully in to remission, that will open more doors for treatment options that will hopefully lead us to a cure. 

Although the meeting was hopeful and the doctor we spoke with is optimistic, we are still left waiting.  The earliest that Phoebe can be enrolled in the trial is next Monday.  The dose of the chemotherapy she takes to keep the Leukemia under control was changed last week and as part of the study criteria, we need to wait 2 weeks from the last dose change.  In addition to this, there is one single spot left in this particular trial, and that spot can be taken at any moment. 

Right now it feels like we are in a race against time.  A race that also has many, many road blocks and hills that we must climb in order to get to the finish line.  Phoebe's white blood cell count has to remain under 50 in order to be eligible for the trial.  It was 36 yesterday and we have eleven long days of waiting ahead of us.  We are hoping that the results of the blood tests show that she is eligible but also that her white count continues to be controlled by the chemotherapy that she is taking.  In the event that Phoebe is not eligible for the trial, we will sit down with our doctors to discuss further options, a different trial, or treatment for Phoebe, but for now we will focus on the task at hand.  That is enjoying each day that we have with Phoebe, whether it be in the hospital or at home.  Surrounding her with love, hope, strength and laughter. 

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