Charlie Waller died aged 5 on December 5, 2013, nearly
three years after being diagnosed with an incurable brain stem
cancer, a diffuse intrinsic pontine glioma, or DIPG.
He accepted his radiation and hospital stays with stoicism,
though once, after breaking a wishbone, he confessed his secret
wish – that the doctor’s pricks would hurt no more.
He was not
“fighting" cancer. With his brain stem tumor that would have
been an impossible battle. Instead he saw it as a part of his, a
life so focused
on love that it was not perhaps that important.
The breadth of his love was unusual, fervently embracing all
creatures from repulsive and poisonous bug to cuddly kitten.
Like Charlie, many children are generous but Charlie was at the
same tolerant of those who are not, explaining that kindness
does not come easily to all. Some have to learn it. If giving is
easier than receiving, Charlie understood that sometimes you
need to be generous when receiving, and would express dishonest
delight when given a toy he already had.
joke, not immediately obvious, was Charlie’s labeling people as
“bad guys” and “good guys”, the joke becoming apparent when you
realized they were the same. Similarly you would learn that the
distinction between what he defined as “real” and “not real” was
more blurred than simplistic logic would suggest.
comprehension largely compensated.
This is not an encomium and Charlie was no saint. He could be
naughty. He teased his sister and drew naughty pictures. Yet his
short life may have had more impact than many that have lasted
the full term.
His condition inspired the family to create their charity. The Art
for Charlie Foundation promotes the availability of hospice care for
other gravely ill children and helps families facing either such
a diagnosis or suffering the inevitable bereavement that follows the death of a child. More important over time,
however, may be the imperceptible ripple effect of love and
kindness without boundaries.
How does a child imagine
“I’m scared, Mama,” he told his mother at the start of
the final, fast progression of his tumor.
He even dreamed of giving himself a new brain (see the
plenty from his disease and his last days were made bearable
only by opiates. Yet his concern was for those left behind.
a few days before he died, he drew a card for his sister’s
birthday which was months ahead, explaining that it would make
her laugh. He drew a card for his Dad, depicting a dinosaur with
many arms. The arms were to hug his Dad whenever he felt sad.
Charlie died at night on a sofa in his own home in the arms
of his mother. He was cuddled tight. It was made possible by
hospice, in this case Hospice of Michigan. It’s why we promote
pediatric hospice. We all want the best life for our child.
Sadly some of us, fortunately very few, will need to want the
The Foundation continues his spirit by
helping other children who face a terminal or life limiting
diagnosis and by providing support and comfort for their
mother, Abigail, records her emotions and experiences on the web
site Abigails Journal
by way of imaginary letters to her son. It is an important human
record of a truly horrifying experience.