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, September 9, 2011

Anything is possible

Over the past couple of days we have had many meetings with many doctors.  Trying to decide what the best course of treatment is.  The study drug, although it appeared to work very well during the first 2 doses, has not seemed to have had any effect on Phoebe's cancer since then.   Because it is an experimental treatment, no one seems to know what it will or can do now, but there seems to be hope among the doctors and they feel that it may still have an effect.  All of this considered, we decided to give Phoebe the final dose today, and to watch to see if anything happens.  In the event that nothing happens and her white cell count continues to climb, we will pull her off of the study and begin standard chemotherapy.  No one is giving up. 

Today, Phoebe's white cell count is 37.  We seem to be back where we started which is frustrating to say the least.  If it is higher tomorrow, the doctors are recommending chemotherapy with the initial goal of lowering Phoebe's blast and white cell count.  This chemotherapy will help to control symptoms of Leukemia which will also help to make Phoebe more comfortable.  Then, more chemotherapy drugs will be added with the goal of getting Phoebe back in to remission.  Because this is the first relapse of Phoebe's cancer, the statistics regarding her chance of getting back in to remission with standard chemotherapy are good.  Well, I think they are very good especially compared to all of the other statistics that we have heard over the course of treatment.  The challenge it seems, is what to do once (because we will get there) Phoebe gets into remission.  There are many unknowns and we have many unanswered questions.  It is difficult to move forward without really knowing where we are going, but we have faith in our doctors and we believe that there is a light somewhere at the end of all of this, we just need to find it. 

Now for what we do know.  We know that our doctors are working very hard to find answers, and we are reassured to know that they are searching for the best possible answers for Phoebe.  We are aware that little is known about treating such an early relapse, and because we are reminded almost daily, we know that Phoebe's chances are very small (albeit mighty).   We know that each day is a cause for celebration because it is one more day that we have with Phoebe and another day that she is closer to a cure.  We know that many people are working behind the scenes and we witness first hand how the research and search for a cure is ongoing and advancing everyday.  We believe that a cure will be found in this lifetime.  And more than anything, we know that it just takes one.  One child, one doctor who believes that anything is possible, to make miracles happen.  

Please take a moment tonight to tell your loved ones just that ... that they are loved.  It is so important.  And please keep our Phoebe in your prayers.  She knows that she is loved and that is so important to me.

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