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.

Saturday, July 7, 2012

Counting my blessings ...

There is an element of fear in each of my days.  Sometimes I hardly notice it - it might happen when I realize that Phoebe has slept in, or when she doesn't eat as much for lunch, when she naps longer than usual, cries more often - I brush it off, thinking to myself that I am crazy and neurotic and that everything is fine.  It is hot, we are all tired and cranky.  It is fine.  But sometimes it keeps me awake at night.  It comes in a rush of panic, fear and worry.  Riding on the memories of children who are no longer here, absorbed in the thoughts of parents and families who have heard devastating news of loss or relapse.  A story of a beautiful and seemingly perfect and healthy child whose blood work or spinal fluid said otherwise.  It never really goes away. 

I choose each day to ignore it.  I force it to the very back corner of my mind and I live my life and focus on all the good and positive things that are filling my days right now.  I do this to honour those children who have not been allowed the wonder of growing up.  For the families who are left to pick up the pieces of a life that is to be lived now, without all of its precious pieces.  And because if I let the worry take over, I might just lose my mind. 

We are complete, we are through fighting cancer, we have been given a beautiful gift and each day is a cause for celebration.  Phoebe is here.  We are here and although cancer still haunts my thoughts, it no longer runs my life.

Last night for the second night in almost 20 months, my sweet baby Phoebe went to bed without receiving any medications.  We did not have to hold her down, politely ask her to open her mouth, and when she cried as most of us would, we did not have to force her to swallow multiple foul tasting medications.  This sad routine, has been ours for too long.  The worry of fungal and viral infections, a weak and not yet recovered immune system, and instructions from knowledgeable doctors trumped any kind of comfortable bedtime routine for Phoebe.  However, last night, and today and hopefully for the rest of her long life - Phoebe's immune system is strong.  It is not yet perfect, but it is getting there.  The results of the helper t-cell test (these are wonderful white blood cells that fight against viruses and have been shown to also kill cancerous cells) that was done as St. Jude shows that Phoebe's cells are now high enough to warrant removal of these medications.  We are now down to one single drug - given only 3 days a week, an antibiotic that will also protect Phoebe from PCP pneumonia.

And so today, I am counting my blessings.  Each and every one because as one of our doctors once said ... we don't know what the future holds.  I can only hope and pray that it holds my family together. 

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