Keeping track

32, 31, 30, 29, 28...

We are down to the last month - 28 more nights of oral chemo. That's 106.4 mL of mercaptopurine and 32 mL of methotrexate.

I teared up when the pharmacy tech handed me the last bottles. June 4th she takes her very last dose of chemo.

Each night for the last couple of weeks when I return to our bedroom, peeling off the glove and putting the chemo bottles away, I update Greg on the countdown.

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Within the first couple of days of treatment one of Hope's inpatient nurses brought us her very first Beads of Courage. It's a program where kids with cancer and other diseases get different types of beads to represent each and every aspect of their journey. 

A red bead for a blood transfusion.

A yellow bead for a night in the hospital.

A black bead for a poke.

A white bead for a chemo infusion.

Bone marrow aspirate, lumbar punctures,  hair loss, X-rays - everything has a bead. 

And there are special beads too - for personal milestones or challenges. 

And a purple heart bead for completion of treatment.

In those early days and weeks of treatments nurses would deliver tiny bags  of beads at the end of every shift. I can't remember when exactly I asked them to stop but I remember why. I saw a photo online of a little boy, about 10 years old, who had reached the end of his treatment for leukemia with strings of beads draped around his neck and shoulders. So many beads I thought the weight of them must actually be uncomfortable. He was smiling broadly and the post was triumphant. It was extraordinary to see what he had been through and know that each one of those tiny beads represented another small horror that he had lived through. 

The next day I told our nurse no more beads.

Something about that photo was too much. I couldn't bear the thought of collecting these mini monuments to all Hope would be forced to endure. And projecting myself to June 5, 2016, I could think of nothing I would want to see less than a colorful testament to every stick, poison, and sob from the years spent battling leukemia.

But not surprisingly upon recent reflection I've realized that I was wrong. That Hope deserves to see what she is capable of and to know that her strength is worthy of pride. That we who witnessed her weeks, months, years of treatment should be overwhelmed by the image of Hope draped in impossibly long loops of glass and plastic and clay beads of every hue, of her most precious and light-filled smile despite the weight of it all.

We could catch up - add the dozens - probably hundreds - of beads that Hope has "earned" since February 2014. It would require counting up her clinic and ER visits, her infusions and procedures, blood draws and X-rays. And then we'd have to string them...

OK, let's be real. That seems unlikely. So maybe we'll just post photos of Hope and her smile and imagine those loops and loops of beads in rainbow patterns spilling off her shoulders.