Radio Silence

Twelve months is a long time to say nothing when your child has a cancer.  You hope for life to be uneventful in ways that would make updating a journal unnecessary.   The primary cause is somewhere around busy, lazy, guilty and conflicted.  We know parents who don’t have the luxury of procrastination.  They are counting the days, logging the precious trivia and capturing every moment, not knowing if next week or next month that the worst predictions will become their reality.

13, Chronologically

Jerry officially became a teenager on April 6^th, 2015. That seems a little odd because he’s bigger than his dad in all directions and can knock you over with a single roar. He’s had the stature and demeanor of a high-school linebacker for so long that I sometimes need to run the calculation in my head.  2015 minus 2002…  yes, that’s still just 13 and I have not been in a coma for five years.


As I reported a year ago, Jerry's growth and weight gain trajectory was a concern to both us and his doctors.  He's taking a lifetime supply of synthetic thyroid hormone because the Proton radiation roasted his hypothalamus.   His body is predisposed to weight gain because of the factors I previously explained.  The team encouraged us to watch the food intake, and make him get some exercise.  HaHa.. that's a real rib tickler.  You doctors are regular comedians.   It's not that Jerry doesn’t like to run around and do physical stuff.  It's the hilarious notion that Jerry would voluntarily and without coercion embark on a lifestyle-altering program of exercise.  

Jerry doesn't appreciate sneaky
pictures as he pounds out the miles

After I got done slapping my knee, I realized that my Pavlov's-confirming kid might be persuaded to exercise if a distracting stimulus was part of the experience.  I thought that maybe a conveyor of food whilst exercising seemed counter-productive, so I'll put the kid on the conveyor, and add a little TV instead.  It works in gyms, so why not at home?  Knowing that the novelty of the treadmill alone would have worn off of Jerry in mere minutes,  I ordered up the treadmill and the TV, installing them both in a single effort.  The result has been about as good as we could have hoped.  Jerry has not lost weight, but has largely plateaued from his prior trajectory which would have easily put him at 350 pounds by the time he turned 16.    He has put many hundreds of miles on the treadmill since it was installed 13 months ago.  He's worn shoes out and bolstered his stamina, while putting some brakes on the weight gain.

Life has been pretty good for Jerry these past months.  He’s oblivious to many things of importance, caught up in being an otherwise typical teenager.  Rarely does a day go by that we don’t look at him and wonder if there is another shoe.  If so, will it ever drop?  We'll be older and more wrinkly, maybe visiting Jerry in his own home, in his own life, and the question will likely linger at the back of the mind.  Is there another shoe?  The longer he goes without something bad happening, the easier it is to see a day when we stop thinking about it.  For now, we see trivialities in a different light than most.  A stray fearful thought, a phone call, or a jogged memory triggers a pool in the lower eyelids.   A headache, nosebleeds, a strange pain near his eye, a seemingly involuntary movement of his right leg.  Things easy to miss if we were not looking so often and so intently.  

1,200 pieces

Vise-Grip

Jerry's doctor wrote a letter during the year declaring Jerry's arm permanently disabled.   It's something we asked about because we have to plan for what he will need to function as best as he can.  Jerry’s adaptations are strong and he doesn’t play the disability card.  We’ve watched him build multiple 1000+ piece Lego models with almost no help.  He uses that disabled arm sometimes as a sort of vice, locking something down to the edge of a table so he can do the fine motor activity with his left hand.   As ungainly as he sometimes is, it’s notable that he’s got such control in his good left arm.  He can catch a nerf football pretty well in one cradled arm.  He’s become rather accurate at one handed shots during our one-armed-basketball contests, where Dad’s not allowed to use his weak arm at all.  Jerry is allowed to use his bad limb as a protective “stiff arm”, and is it ever like a baseball bat sticking out the side of his body.  Though it’s not good for much, he can use it for some blunt operations, like, say, clubbing someone into a pulp.  It’s no picnic to get clobbered by it.    Jerry continues in one-handed piano, and is doing about as well as he could be.  There are things he cannot do well, or at all, but he tries and rarely sounds defeated.  

Study that

Pilot and bunny sleep

Since we hate to see the medical profession go hungry, we embarked on new medical adventures since our last update.  All indications are that Jerry does not sleep well.  He could log 10 hours at night and if allowed, also pass out for 2-3 hours in the afternoon. The medical brain trust doesn’t really know if this is from cancer, or from radiation or some pre-existing problem.  However, they certainly have expensive solutions that, unsurprisingly, didn’t work for him.  Jerry had a sleep study performed followed by four months of going to bed outfitted like a fighter pilot or scuba diver.   He's back to unencumbered sleep now, even if he's not actually sleeping very well.

Unscheduled Nap

Jerry has been moved to a 6 month schedule for MRIs, with his next coming up in a few weeks.  Praying for continued "all quiet". 

A year is a very long time in the pediatric cancer world.  We’ve seen new diagnoses and relapses, though it’s more because of who we know rather than any epidemic. People in the circle learn of others in the circle, in an unending cycle.

Every so often, I can’t help but note that some people refer to themselves or others as veritable parents of the year because they pulled off some overly realistic or particularly clever Halloween costume, got their kids to read all summer, trained their children to hate sugar, or achieved some other pinnacle of parenting by the measure we ourselves used to consider.  All fine things, but cancer changed my perspective on parental heroics.  We've seen parents in a perpetual holding pattern, believing for the best, but with a raw edge always near the surface, hoping for no news.   Parents unable to work and struggling because cancer threw a giant rock through the windshield of their already difficult circumstances.    A mom trying to hold it together without a dad who cared enough to stick around while her girl declined and died.   Parents who take turns driving hundreds of miles for multiple surgeries to repair the damage cancer wreaked on their daughter.   A mother relocates for long stretches to a distant hospital with her boy, who has relapsed with a high mortality cancer, spending more time in hospital than out, enduring horrible procedures, while clinging to hope that he will beat difficult odds.  A family with a terribly difficult cancer and other serious health conditions coupled with financial calamity all around them, struggling to stay afloat.  You see cancer families fighting on where efforts to help with their needs go unnoticed.  A dad whose daughter fought bravely, as he struggled with the reality of his powerlessness in the face of the beast.  Parents who lost their child and who still serve and befriend other families on the cancer journey.  Families with unshakable faith and endless love, during and after their loss. 

Parents of the year.

Boys with their toys in the woods

Jerry uses dad as a steadying arm for a 
little .22 target practice

Not bad at 50 feet or so, 
all considered

When you've been used to spending 
most of a day at the hospital on every 
single visit, 20 minutes entry to exit 
is worth celebrating.

It's convenient that Jerry is normally
in a Darth Vader mood

Walking to fund Brain Cancer Research

Weird Hair Day at Co-op

At least two look excited about first Homeschool Co-op of the year

Even when it takes teasing to find it,
the real smile is the best

Limited entertainment 
options when
waiting for doctors

As long as they have to watch 
him, there will be IVs.  IVs are 
no fun for Jerry.
Deep, uncooperative veins..  
Never easy.

Jerry enjoyed our hike into the nearly invisible Grand Tetons, even with the considerable wildfire smoke.  Of course, he injured his foot by the end of the day.

Jerry watched Old Faithful erupt from a chair in the distance.  As he is apt to do, he injured himself and needed a wheelchair

Not Jerry's real arm, 
but close.

Jerry, and an uninjured child,  use mom for a 
crutch on the way back to the Old Faithful Inn

Jerry enjoys a milkshake while 
walking on the treadm...
....HEY, wait a minute!

Dad's still unfinished project will 
make it easier for Jerry to get to 
and from the river

Jerry flashes his best grin at the long-awaited arrival of a photo book
from his 2014 Pilot For A Day experience, courtesy of
the U.S. Air Force 4th Airlift Squadron