Call with questions

"Do you ever get tired of this?" Jerry asked recently as I transferred him from one place and position to another.  It was a question encoded in a slurred speech only his mom and I could be expected to understand.  "No, buddy, of course not.  We never get tired of helping you." was my reflexive response.  It wasn't just what he needed to hear.  It was true. 

Jerry 11/20/2022

Ten years ago, last month, we headed off into the unknown with some vague directions.  Doctors with Ph.Ds to spare gave their advice, and we followed along with trepidation, then hope, and eventually some optimism.  Somewhere early 2015, we reached a stopping point on the trip that felt like stability, and we moved on with our life and made typical plans based on logical assumptions.  We felt that things seemed to be on an even keel.  Jerry's relatively minor problems were not getting worse.  No new concerns revealed themselves then, and that would remain the status quo for close to five years.   

We've long lost track of the numbers and types of medical specialists we've seen with Jerry this past ten years.  Neurosurgery, Neuropsychiatry, Neurooncology, Endocrinology, Radiology, All The Therapies, Genetics, Ophthalmology, Radiation Oncology, Neurology, and pretty much anything else you could name ending in -gy.    Janelle and I imagined that with this deep bench of expertise we would at least have logical answers and reliable guidance if things were to take a negative turn.  These experts have seen it all, right? Even when the particulars of a case are very rare, we never contemplated that we would have experts tell us they don't know and.... call us if you have any more questions.   

We don't fault the doctors for us getting stranded on the journey to destination unknown.  During our initial fraught meetings with a team of doctors in October of 2012, we knew there were few guarantees.  They admitted early that the advances in treatment of brain tumors and brain cancers had not kept pace with other types of cancer.  With rare configurations like Jerry's, the team hedged their statements and predictions with 50% five-year survival estimates.    We expected, somehow, that things would either get worse and we could expect an obvious, inevitable outcome, or Jerry would reach stability and have a normal life with some minor modifications.   The eventuality we never considered was that Jerry's life would become dramatically limited, and that his case would stump our experts to the point that they would give up without explicitly admitting so. 

Family trip to Cannon Beach, Oregon in 2022 

We found out what happens when the best doctors are baffled.  They send you to other best doctors, because you're an adult now, or we need fresh eyes on this, or Jerry's main oncologist is retiring, or insert rationale here.  Unfortunately, the other best doctors took a good look, spoke slowly and comfortingly, then told us they also didn't know.  I believe they are also waiting for us to call if we have more questions.  We have not heard from any of Jerry's existing specialists in well over a year, and we don't expect to.   

This is where we find ourselves today.  We're in the middle of nowhere, population 3.  Jerry's siblings will eventually move on with their lives.  This is not their responsibility or burden.   We've been assigned this position by the lottery of life.  We are twenty-four-hour caregivers for our twenty-year-old son who needs significant and often total assistance with every function of living.

Jerry can't walk with any form of assistance, nor can he even stand on his own.  He's an extreme fall risk during any kind of transfer.  He's lost the ability to do so many things that are routine and automatic for the rest of us.  He needs nearly complete assistance with eating, dressing, bathroom, bathing.  Of the things he can feed himself, he's a choking hazard and must be monitored.  He needs supervision every waking hour.  The list of things he can do without assistance is rapidly approaching zero.  Most cruel perhaps is that he's almost entirely lost the ability to make himself understood when he speaks.  We try to work around this problem with an iPad, but it is a constant struggle.  Jerry's cognitive processing speed and ability to remember what he had planned to say are diminished, so many times the moment is lost by the time the device is at the ready.   Often, we figure out his intent through questioning and a process of elimination.  

In the middle of this, somehow, Jerry is a joy to us.  Maybe it's because he laughs with volume and gusto at the slightest silly joke that we deploy about whatever the care chore of the moment happens to be, or a quip about something he's doing or watching or playing.   He is genuinely and abundantly grateful for everything that is done for him.  He is kind and concerned about people.  He thanks whoever is attending to him at the moment through slurred and drowsy speech when one of us transports him to the bathroom in the middle of the night, every night.  He says, "I love you" and "good night" in a manner that is reminiscent of a toddler learning to talk, even if it's 4:45am and he's already been up earlier that night.    

The extent to which Jerry's life is now limited was not something we considered.  Though he appears to understand most things we say to him, his ability to respond in a meaningful and timely manner is profoundly degraded.  We often must interpret what is needed without a fully intelligible response.  Beyond all the physical help he needs, communication is the most worrying long-term concern.  We want him to be able to communicate and advocate for himself as needed.   We fear he will lose what remains of his ability to do so.  

There are some minor changes in the past few years in Jerry's brain scans that might be consistent with this trend of increasing disability.  The question that the doctors seem to be unable to answer is where it will go.   We are struggling to imagine the likelihood or timeline that may leave Jerry bedridden, or unable to eat, or other functions lost that he is barely clinging to now, even as we hope and pray that will not become his reality.        

Jerry on his cruise ship balcony
Dec 2021

We have some outside caregiver assistance now to help us with Jerry when neither of us is available, or to give us an outing for a few hours together from time to time.   We try to include Jerry and bring him places at any feasible opportunity.  We took a family trip last December that involved coast to coast air travel.   It was very difficult in so many ways, but we did it almost entirely for him due to the rapid deterioration in his condition and the concern that he might become incapacitated.    Our hopes of getting another trip to back to Ireland with Jerry seem to be increasingly out of reach.   

We have a few types of wheelchairs for different circumstances, and a variety of other safety equipment to help move him from place-to-place inside our house, without falls, though very little of this equipment would make air travel easier.  Handling Jerry is no simple feat since he outweighs each of us by 100+ pounds.   I describe him as a tall upside-down bowling pin made of lead.  He has no balance, coordination, or meaningful gross motor control.  Without the equipment we have, serious falls would be inevitable, and low speed falls were a regular occurrence until we added specialized transfer equipment this year.  

One of the most profound losses Jerry has suffered is companionship and relationships with friends.  We understand why, and fully accept it.  Jerry's life changed most at a time when he was growing into late-teen years.  His friends all moved into new phases of life, where Jerry could not follow.   Because he can't really express what he is thinking and feeling at a deeper level, we believe he struggles at times with depression.  Some friends have been family to him and have visited him and tried their best to show him that he's not forgotten.   Visiting with Jerry isn't the easiest because Jerry can no longer hold real back and forth conversations.  Those who have tried to keep in touch with Jerry and include him - you know who you are, and we appreciate you very much.     

We continue to search for a new clue, a different opinion, a clinical trial, or anything that might tell us more than we know today.  We've recently self-referred to the Mayo Clinic system to see if they will either reach the same stalemate or present us with new options.  The alternative seems to be watch Jerry decline without a fight.  We are tired, but we're not tired of searching for ways to improve Jerry's life, and we're not tired of helping our boy who didn't deserve to be trapped in a failing body.     

We're back on the road and will report back with anything new.

P.S.   Some people exchange messages with Jerry on Instagram of Facebook Messenger.  We greatly appreciate this, and we know Jerry loves it.  

For anyone willing to write short messages to Jerry, he is able to tap out very short sentences on instant messengers.  He is on instagram and facebook.   @jerry_at_cc  or facebook.com/jerryinorting

His responses are not likely to be very profound or conversational.  He doesn't have much to say, but he loves getting messages from people.  Regardless of whether you think he might not know you or remember you, he won't care.  He loves people.  Say hi.  Send him a picture of you and your people or pets and remind him who you are.  He might respond right away, or in a week.  You never know.   

Jerry and mom, Cannon Beach, Oregon, Summer 2022

Jerry with random street pirate. Fall 2022.

It wasn't my idea.  Summer 2022.  

We are always looking for a reason to get Jerry out of the house. Fall 2022.  

Jerry, Janelle & Miriam in the Caribbean, Dec 2021

No promises

If you owed an unspoken debt for many years, it would be fair to assume it was forgotten and that the creditor would never come knocking.  That's a bit like how it feels to have long term medical uncertainty hanging over your family.  We wish it was as simple as paying someone to make it go away.   

It’s been five years and two months since this space has published any new words about Jerry and his life.  Since mid-2013, after radiation, chemo, and a flurry of initial MRIs, we’ve always clung to the conventional wisdom repeated by Jerry’s medical team – “Great news, the tumor looks unchanged from last time!”, or “Everything looks good, see you in a year!”   Though Jerry’s right arm was often out of control even back then, from about 2014 to 2018, we continued in unquestioning optimism that we would just help Jerry adapt to being a one-armed bandit and move on with his life.

Jerry recently at a restaurant, probably
laughing at a stupid Dad comment

We’ve long considered Jerry to be a bit of an exaggerator.   He’s strategically applied exaggerations to avoid school, exercise, bathing, brushing teeth, chores, etc.  When he told us periodically in 2017 and 2018 that his right leg had tremors or other involuntary movements, we didn’t think much of it.  There was nothing obvious.   Jerry was able to “run”, if in a rather terrifyingly unstable-looking style, so our concerns about evidence of progression were on par with those of a runny nose or occasional cough.  You eventually learn to ignore the small stuff.     

Like anything that sneaks up on you, it sometimes takes some unusual events to make you step back from the minutia and notice that there are broader, systemic problems.  We can’t even pinpoint today what those events were.  Maybe it was the day we noticed Jerry was limping a little or dragging his right foot.  Or was it the time he was lying in bed and his leg seemed to be involuntarily moving?  Was it when we noticed his eyes are not tracking identically or one eyelid seemed more open than the other?  Did we just look at each other one day and realize we can sometimes barely understand what Jerry is saying?  All these things happened, and we forget when, or where, or what the revelation was at any particular moment that resulted in the recognition that Jerry’s body was no longer working properly. We went through 2020 increasingly aware that things were changing for the worse.

Jerry’s February, 2021 MRI showed no significant tumor change, for the 8th consecutive year, so that was more "Great News!"    

It’s hard to write that and not laugh, cry, be angry, or all of those at the same time.   

We sat in silence last month with the doctor as he told us the team saw nothing on the images that could explain what was clearly happening.  They are literally speechless.   Jerry’s motor functions are grinding to a halt and none of the smartest brain and neurology specialists around know why that is the case.  This downswing has come too late, and too rapid to be late effects of chemo and radiation, they say.  It’s not a clear malignancy or growth in the tumor, so far as they can see, but they are measuring shadows and internal structural qualities, and that’s all the evidence they can see.  They would admit now, as they did eight long years ago, that their understanding of what could be happening is limited.  We appreciate that they continue to search for clues and possible treatments.  

The symptoms Jerry is dealing with would be consistent with the location and type of the brain tumor.  Therefore, there is no reason to suspect that his decline is from anything else, though all possibilities are being considered.   

Jerry drives his brothers in the snow 

Jerry has every reason to complain about his life, but rarely does.  He is kind hearted, good natured, and grateful, even as he struggles to cope.  We believe he wrestles with his losses of function, and loss of what his future might have been.  His uproarious laugh is still there to make your ears hurt.  He’s appreciative of those who care for him and cater to his many and increasing needs, and for friends who take the time to treat him a little like it’s still the old days.   There’s a lesson for us even in the one who is neediest in our midst.     

Our first clue that things were about to change in a significant way was maybe a year ago, when Jerry had to be escorted up and down the stairs, effectively with a “spotter” who would steady him if he started to lose balance (which he frequently did).  Eventually, the fall risk grew, forcing us to relocate Jerry from his upstairs bedroom to a guest room below.  As part of that move, we did an extensive downstairs bathroom remodel to make it safer for him to use.   

He'll put up with anything if
there's a screen involved

In the months since he re-located to the ground floor of our home, he’s experienced many other changes.   His speech is significantly impaired, to the point that untrained ears often have trouble understanding him.  He began falling often, while upright and even falling out of bed.  His walking ability has deteriorated to the point that he needs supervision and assistance to walk even a few steps, though there is variability there also.  He has very poor balance.  To go along with the physical impacts, Jerry has had a significant cognitive decline when it comes to processing speed, reasoning, and following steps to complete a task.

Jerry is now dependent on us for many functions of daily living and he can't be left alone at home without someone strong enough to help him up if he falls, or to do many things others could do for themselves.   

A little over a month ago, we acquired a mobility scooter for Jerry that we carry in a lift on the back of the family transport.  It’s helped him a lot, and it’s even fast enough at 8mph max speed that he can go with dad on easier runs. It’s not usable in the house, however, so we needed another solution there.  Feeling no time to be wasted, we skipped dealing with the experts and professionals and found a newer used power chair.  Jerry’s still learning to not crash this 385lb beastmobile into every surface in the house, but it is filling a vital need for us all at this time.

 

Back at the old stomping grounds.  We don't miss it.

We were made no promises.  At the beginning, the brain tumor team at Children’s told us that Jerry’s non-malignant tumor is very rare in location and type.  They didn’t have a prognosis, but tentatively offered us a guess of a 50% 5-year survival rate, which took our breath away at the time.  As the years pass you grow more optimistic that survival looks more and more likely.  We currently don’t have a reason to believe that Jerry will not live a long time.   What has come more into question is what his life will be like.   It seems now that it will not be what any of us imagined or hoped for even three years ago.   

No promises, other than what we cling to – There is more after this, no matter the present uncertainty.  One day Jerry will be made whole again.   

 

Jerry and his pals from his last year of high school

Eyes on the road.... most of the time

 

We call him "Transformer" in his new chair

Mom and Jerry out and about in 2020 when he still had a walking game

  

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