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