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, August 22, 2011

Taking the long road

We will know for certain on Wednesday, but as of today, there are no longer any spots left for Phoebe in the clinical trial.  This decision was based on which patient was ready to start the earliest, and that unfortunately, isn't Phoebe.  So now we do what we have become very good at.  We wait.  We will wait to hear more news on Wednesday, to discuss more options, and possibly wait for another clinical trial.  We desperately want to start treatment, to have a better idea of what our next steps are and to help Phoebe.  Many things - our sanity, Phoebe's health and our plans for the future are being held together by very, very thin and precarious threads.  At times it feels like the happiness that we have come to know - the happiness that comes with being together at home as a family of four,  may be snatched away at any moment.

And then there is Phoebe ... it would seem that no one has told her that the cancer is back.  She is thriving, growing, laughing and smiling.  She is even getting teeth.  Two new teeth finally poked through yesterday.  Her white cell count was 17 today, so it is on its way down again.  In addition to this, today was our first clinic visit in over 3 weeks that Phoebe didn't receive any blood transfusions.  She will probably need one tomorrow, but we were very happy to be sent home early from the clinic today.  All of this being said, the fact that she has a raging, unpredictable and aggressive cancer inside of her is never far from our minds.  We have no idea what it will do, how long it will stay hidden, or where it will go and that scares me to death.

And so we are taking the long road.  There is a beautiful little town in Scotland, where my mother was born and where many of my family live today.  It is called Rothesay and is on the Isle of Bute.  To get there (and you should go) you can choose to take the short road from Glasgow to Wemyss Bay and then a large ferry that takes you directly in to town, or you can take the long road.  The long road stretches along the shores of Loch Lomond, is full of curves and hills and it takes you to a tiny ferry that leads you to the edge of town.  As a child I loved taking the long road.  The winding road, the tiny ferry.  It was wonderful.  And although it took forever  and often had its share of obstacles - mostly of the farming variety, it eventually led us to our chosen destination.  I mention this because today when I was thinking about Phoebe's road to recovery and her many many obstacles, I simply thought - well, I guess we are taking the long road.  Perhaps this trial isn't Phoebe's best chance for remission - perhaps waiting will bring us more options and better opportunities.  We can only hope that eventually we will get there.  And get there we will.  

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