A Failed Experiment

by Troy P. Foster

When we first learned that Henry couldn’t eat food, it was mostly sad for us.  He was too young to really care.  And, every time that he ate food, he became sick, lost wait, or ended up in the hospital.  So, being no dummy, Henry couldn’t be bothered.  He was more than satisfied “holding” some food or making an “experiment.”  The experiments were very impressive pieces of art, and included every condiment imaginable.  My favorite was a biscuit with tobasco, ketchup and mustard – topped with whipped cream, craisins, and oyster crackers.  All in all, Henry really wasn’t phased by being limited to a feeding tube diet.  Until lately.

In the last year, actually, Henry has grown more and more interested, and more and more persistent, in his desire to eat.  We think that his interest peaked when his younger brother started eating solid foods.  As a big brother, Henry wants to be able to do what Eli does.  Everything.

Henry’s strength – in coping and dealing with his illness – translates, unfortunately, quite directly with his interest in eating.  He has been relentless.  Asking Kristen and I if he can “try something,” in the sweetest of voices – over and over.  His initial requests were met with unequivocal denials.  Soon, we found him in the closet with a mouth full of Oreos, chocolate lining his lips.  Or, that a handful of crackers that he just wanted to hold – would suddenly and inexplicably disappear.  The dogs caught a lot of heat, as did Henry’s siblings – all of them.

In the months that followed, Kristen was the first to break.  I learned, indirectly, when the oldest kids, our self-appointed informants of everything, told me that she had let Henry have a bite of coffee cake from Starbucks.  Then Henry, not doing himself any favors, started suggesting that he and Kristen head to Starbucks alone.  Neither the snitches nor Henry knew that Kristen and I had already talked about her slip, which made her “the” target for all of Henry’s pleas. 

I didn’t want to cave.   Henry was allergic to all of these foods.  And, letting him eat them would cause, without question, long term damage to his gastrointestinal track.  It also significantly increased his chances of developing stomach cancer.   But, as his birthday approached, his requests came at both of us.  They were non-stop.  He is good, and though his persistence is tiresome, it sure makes me happy to see given what he faces every day.

So, on his birthday, I too fell.  Truth be told, he doesn’t really want to eat much – a couple of bites is more than enough.  He wants to be able to say that he’s eating and to taste different things.  On the day he turned 4, he had exactly two bites of cake.  We, of course, let him brag about how much cake and ice cream he ate.

A few weeks later, we were at the Children’s Hospital to have Henry see the psychologist.  He has been asking about things a four-year old should never ask, or at least should never be relevant for such a young guy.  And, the program requires participation in therapy, which is terrific.

We shared our lapses with the psychologist.  I had expected a brief scolding, a reminder of the ramifications for Henry, and suggestion that we work with our therapists about our issues in not letting him eat.  But, not even close.  Dr. Mellon (hilarious and ironic) because Henry asks if he can eat him, shared something different.  He asked us whether we thought letting Henry try foods once a week or once every two weeks would increase the quality of his life.  That, if he doesn’t get sick outwardly with those infrequent “tries,” maybe we could forget about the long-term affects.  What?  I think that I would have preferred to have the conversation that I anticipated.  For me, Dr. Mellon was asking us to accept that long-term is not likely in the cards.  In his office, it felt like giving up.  And, we won’t do that.

When we talked privately, Kristen had a better take on it – as usual.  Team Foster is not giving up, and we’ll keep fighting.  But, if he can enjoy the ceremony around trying something every week or every other week, it would mean so much to him.  And, on balance, if we have to deal with a higher risk of cancer or damage to his GI system, we will.  We hope to have to worry about those long-term issues, but can live like it.  Holding onto that for ourselves, it seemed to me, was very selfish.

So, that week, we began his “taste testing.”  If Henry sits at the meal table and doesn’t beg for food during the day, he got a point.  After seven points, Henry gets to try something.  We let him “redeem” his points on the weekend – so that we could make a very big deal out of it.  And, we did.  All of the kids played a role, offering their favorite suggestions for Henry’s next adventure.  Henry was so pleased, and only went one day without earning a point.

It was a living life in the moment lesson that we embraced.  Something two first-born, conservative parents would never do on their own.  It was worth it. 

Until, Henry started getting sick.  Even with the small amounts of food that he was exposed to, very infrequently, he started getting sick this week.  We have stopped the taste testing, and are sure that he’ll get back on track with his pure formula diet. 

He knows why we’ve stopped; he doesn’t like being sick.  And we’ve modified that rewards to little toys or choice of movie.  Henry is on board with that, but his heart just isn’t in it.  Of course, that’s hard for us to see.  Henry still holds out hope though.  Two days ago, he asked me if I could “magic it so that he could eat any food.”  (The kids think that I am magic – whole different story.)  When I told him that I couldn’t, and expected to have to explain that I don’t have super powers and talk more about him not being able to eat, Henry interrupted me and said “Oh Daddy, I’m sorry.  Tell me when your magic gets stronger.”

He’s still a believer.  Magic, miracles, and things that just make us laugh.  He helps us believe in that every day.  Despite our failed experiment!

Ohio, O-Bye-O, O-Bio

By Troy Foster                               

We sit in our Cincinnati, Ohio hotel room tonight, and I have to say that I’ve never really disliked a State so much.  In fact, being a pretty patriotic guy and having been to a bunch of them, I don’t think I’ve ever really disliked a whole State.  Now, I do.  Congratulations Ohio – for taking that prize.  Of course, I’m being irrational, projecting, and will soon forgive the Buckeye State.  For now though, I think even natives will understand my current state on the State.

Last summer, our son (Henry) was diagnosed with mitochondrial disease.  The type that he has is degenerative and progressive, no cure, not good on the medical side of things.  His neurologist’s nurse called us to tell us the news – as we were driving through Ohio on our way to Virginia for a vacation.  She explained that his biopsy showed the deficiency.  Why, why – Ohio?

Ok, forgive and forget?  Not exactly forget – because I have remembered, but that passed and my relationship with Ohio greatly improved since last year.  Ironically, Henry’s specialist is in Cincinnati – so we make frequent trips, and have grown to like to like the place – despite the reason for us being here.  The kids (Henry especially) love the special time with mom and dad, and staying in a hotel – any hotel – is magical.  As an aside, I love that purity.  In all honesty, it doesn’t matter one bit to the kids whether the hotel is dirty, in the worst neighborhood, or has no amenities.  It’s an adventure of equal magnitude – no matter what.  So having that with Henry (and the other kids) has made us laugh and smile a lot here in Cincinnati.

But today was the day that broke the camel’s back.  We’re here with Henry for a few days for several appointments.  And, we decided to “check in” with the neurologist’s office to see if test results for Luke, our oldest, had come back.  You see, having gone through what we did with Henry, we thought that we “saw things” with Luke.  “Things” that wouldn’t have meant much had Henry not been diagnosed with the disease.  We took Luke to Henry’s neurologist to rule out the disease, and tell us how silly we were.  He didn’t.  After a brief examination and some blood work, he scheduled Luke for a muscle biopsy to determine whether he had the disease.  (If the consequences weren’t so serious, I’d almost be proud of Kristen and my diagnostic abilities.)

When we checked in, the nurse called me back.  Same nurse that talked to us about Henry – her name is Shirley.  She is very kind, and thankfully, has a calming influence.  But her news was not good.  She told me that the results had come back, and that Luke had the same disease and severe deficiency that Henry has.  After she decided that I understood, she began her discussion about hope, medical advances, and how each patient reacts differently.  And then started to tell me about the clinical studies that they would enroll Luke in.  At that point, I think that I stopped listening.  Hope, clinical studies, medical advances – though her delivery was fantastic – those terms hit with a ton of bricks.  This is our oldest son – the kid that seemed asymptomatic.  The one that they were suppose to rule out. 

Just like any other parent would be, we are devastated by the news.  It is hard to process.  Much easier to blame a State than take in the reality.  But we are in a different place than we were when we got the news about Henry.  He has taught us – all of the kids have really – that living life to the fullest – each and every day – is far more important than anything else.  It’s the little things.  Like the kids loving hotels.  And loving to pretend to be spies.  So we took off for an overnight out of town, pretended we were spies (friend kind), and stayed the night in a hotel. 

Or other little things.  Like kissing each other through the window on the way out the door.  Giving Henry a “wild jump,” letting Luke crawl in bed with us in the middle of the night, and planning our next vacation.  Or letting Lily and Henry cuss in the car during “cuss time” (Lily really loves this).  Or taking the kids on dates, and going to every single event the kids have.  Or speeding over the railroad tracks so that the kids’ stomachs drop as they scream with excitement.  And the things go on and on – buried throughout the minutia of each and every day.

Things that might seem little, but aren’t.  Things that might seem irresponsible – or poor timing – but, on balance, it doesn’t matter.  Things that you maybe “shouldn’t” do – but the shouldn’ts and shoulds changed for us.  (I often wonder if they might be misguided anyway.)  Whenever I wonder whether we should be more traditional, more responsible, more – you fill in the blank . . . I just look at our kids.  Their smiles, the sparkle in their eyes, and the utter happiness that they experience in the littlest things tells me that I wouldn’t change a thing.  What’s especially amazing to me is that Henry, and Luke as of late, are often sick, tired, and have reasons to complain.  They don’t.  Instead, they sincerely and genuinely enjoy the present and look forward.  A perspective that I wish that I had long ago adopted.  They are real old souls.  (Now, mind you, we also have gone to great lengths to have normalcy.  They are disciplined.  They have chores.  And there are no excuses for bad manners or bad behavior.  They are well behaved.)

So we are in a different place this year than we were last with this news.  Actually, we’re in the same State – Ohio – which is what this post started with.  But, we are in a different state in the same State, if you will.  Though incredibly sad and heart-wrenching to have two kids with this disease, we will not dwell on the disease, the symptoms, or the potential outcome.  We can’t.   Our boys won’t let us – even if we wanted to.  Making every moment count, and creating memories now is our focus.  After all, it is the little things.

So, instead of thinking about how incredibly sad that I am that Luke and Henry – my precious boys – have a rare disease and will not have enough energy to complete basic functions at various points – I choose to hate Ohio.  For now.  That’s just until we think of our next adventure with the kids – whether it’s making special cookies for the neighbors or making a craft with toilet paper rolls.  Or watching the fire bugs light up in the back yard.  Who knows, maybe it will even be passing through (or coming to) Ohio on our next big adventure.