NOTE FROM THE MACS STAFF
William's story
was written before he passed away. We will update his story as soon as we receive
more information from his family.
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William's Story
written by mom Maria |
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We feel William was born with his brain tumor,
but in the beginning, the symptoms were very subtle and easily misread, so
we had one of those long roads to discovery: he was 2 years old when we
finally found it.
His only symptom as a baby was a turned-in left eye, but then the eye began
to jiggle, and after many pediatrician visits, eye doctor visits, and other
check-ups, a thorough exam by a Lions Club orthoptic specialist confirmed
our long-standing suspicions, and an MRI was finally ordered.
William's tumor is considered low-grade, which can be a good thing in the
brain tumor world, because it means it is slow to change, but when it was
discovered, its location made it largely inoperable. Surgery at the time
removed just a small part.
Around age 3, we were told that it was showing growth, so we went through
about 60 weeks of chemo along with hospital admissions. His seizures would
intensify during chemo, so more often than not, hospital admissions meant
seizure admissions. When William graduated from preschool at age 5, he also
completed his entire chemo protocol.
As time went on, we became better informed as advocates for our son: we kept
watch for new techniques and new treatments, joined Internet support groups,
and checked around the country for second opinions. In 2002, we were told by
neurosurgeon Dr. Peter Black that surgical technology had improved enough to
consider a second brain surgery, which safely removed a portion of tumor and
successfully stopped most of the seizures that impacted his life.
William is feisty, strong, happy, slightly spoiled, thoughtful, and proud to
be a Wolf scout. His language and thinking are slower than his peers, he's
very literal, very naive. But he is the first one who'll respond to a baby’s
cry, first one to offer a hand on your shoulder, the first person who will
ask you, "And how are you today?"
(..... to be continued .....)
