The last time we saw "normal", it was the morning of July 12, 2011, and
we had to get the kids ready for Camp and go about our day. Jake, came
in to wish Gary, his soon to be step-father, a Happy Birthday, and gave
him his signature HUGGY! (He was awarded "Best Hugs" at camp the year
before – He makes peoples' day all the time like that… Walks up,
introduces himself, and gives them hugs and noogies. That's how he
rolls.)
Within 30 minutes of that hug, we had Jake in the local
ER where he had a CT scan. We were told that it showed a brain bleed in
his right Temporal Lobe. On July 27 we met with doctors to receive the
final pathology results and diagnosis.
The medical team
predicted we would have six months to a year left with Jake, but here we
are nearly 10 months later, and Jake is still fighting the fight with
the strength of a Super Hero. Jacob's treatment began with a 42 day
course of oral chemotherapy (Temodar) and then 7 weeks of Radiation
Therapy to his brain and spine, 5 days a week through September and
October 2011. In December, he began IV Chemotherapy every two weeks,
which he will continue to receive indefinitely.
He has endured
all of this without complaint (mostly) - Feed him a fistful of meds
three times a day, he belts them down no problem. Stick a needle in his
chest, he takes it. Cut a hole in his head, he's up and about in no
time. Tell him he's got to eat the non-marshmallow part of the Lucky
Charms, you've got a fight on your hands!
Clinically, Jacob is
doing extremely well, better than his doctors expected. He is very
active, goes to school, takes karate and participates in many
activities. Each fighter does this in his own ring; and we've got a
fighter with the world's greatest heart, who grins when others might
cry, and hugs when others might shy away... That incredible toughness
that he comes by so naturally. So it is perfectly rational for us to
expect him to chew up his VP Shunt surgery and spit it out, like he's
done with the intubation, the craniotomy, the Port-a-Cath placement, the
Radiation, and the Chemo. He has such a loving spirit and he has
hundreds of people behind him... loving him, praying for him, supporting
his fight. We are all in the position of facing this… Thing: Aware of
its track record, we fight like Hell for more Tomorrows, while we nurse
and cherish every ounce of joy from the Holy gift of Todays. We struggle
to find the faith to transcend the acceptance of what little Medical
Science understands, while relying on a wonderful team of medical
professionals for the amazing care they provide. At the center of all
this is an incredibly tough, sweet, and funny 8-year-old teaching us all
what it is to smile in the face of a fierce opponent.
But
there's also an 8-year-old kid here who won't tell you that he doesn't
understand the cards he's been dealt, and doesn't really know how to
change them. Behind the mask, under the cape, he's scared and confused.
Barely out of sedation after the Shunt surgery, he said, "Why ME?? I
never wanted for this to happen!" He's aggravated that this stupid thing
won't just shut up and leave him alone, and frankly, doesn't seem to
know how to hope, and believe, that this thing CAN change, and WILL
change. It's a surprisingly difficult spiritual insight to instill in a
little guy (to say nothing of ourselves), and we struggle anew every day
to find the right words to light his hope. So if you will, pray for his
strength, and his healing, but please send your light also for his
Hope; his Desire - his Belief in Transformation. Because the greatest
doctors and nurses in the world (and trust me; we've got them...) can
deliver the same treatment a thousand times with needles and scalpels
and machines that go, 'BING!'; But true healing comes from within - From
the fighter who Hopes, and Believes, and KNOWS he can be well again.
