It Was Different This Time

by Troy Foster

Unfortunately, we have had the experience of being with the Henry through many hospital stays.  They are never easy – not the build up and the desperate attempts to do everything we can to avoid having to go.  Not the handoff of the other three kids, and reassurance to them that Henry will be fine.  And not watching the poking and prodding, or seeing the other sick kids that are there.  Or seeing the helpless looks on the parents’ faces as they walk back and forth, sitting, waiting for what is to come next.

In fact, we have been lucky enough to have a proactive approach in his care that most are not afforded.  We know about this rare disease, we know how Henry reacts, and we know what won’t work (for the most part).  Because of its rarity, oftentimes we know more about mitochondrial disease than many.

Though it has never been pleasant – and far from it – it has always been emotionally manageable.  This time was different.

And to be honest, I’m not sure why.  It started off the same.  Henry has pneumonia, doctor has prescribed antibiotic, we are religious about his breathing treatments, liquids, and getting him rest.  Last night, there were some complications (not out of the norm) – so I talked to the doctor and we tried something else.  Worked fine until Henry woke up vomiting in the middle of the night.  Again, not something that we haven’t faced before, but enough to know that we need help.

When I got to the Emergency Room, we were rushed ahead of everyone and Henry was given a breathing treatment and some liquids.  Routine.  Then, we were visited by 4 doctors, each with increasing tenure and expertise.  When Henry’s fever spiked to 103, I had to explain that Tylenol is contraindicated for mitochondrial patients and he needed something different; they obliged.  Henry patiently answered their questions – through his labored breathing – and we watched TV shows and I brushed his cheek with the back of my hand until he drifted off.  All standard.

Things then went a little further south than they have before.  Henry was in respiratory distress, his blood pressure and heart rate skyrocketed, he needed oxygen to maintain saturation, and his fever was unmanageable.  And, little Henry was unresponsive.  Not for a long time – but for long enough to make the experience different.

And then the most horrific thought crossed my mind.  What is different is that reality reared its ugly head for the first time on this journey.  None of the other experiences were standard at all.  They just didn’t hit me the same way this one has.  For me, with all of the other experiences, it seemed that several things would have to go wrong before we faced losing Henry.  Today, many of them did – and quickly.

So though the wind has been knocked out of me a bit (ironic metaphor, I know), this just seems to emphasize how important enjoying every day with our loved ones is - just like Henry was doing with his siblings and cousins just a few days ago (above).  Always was, and always has been. Today was just a big reminder for me.  Small piece of advice:  just take my word for it – don’t wait on your own reminder.

Childhood Cancer, Special Needs, and the Shining Star – Hope

By Troy Foster

Life is crazy.  And the world is quite small.  Since moving back home – across the country – we have discovered that Lily is in the same class with a little girl that is the daughter of Kristen’s high school friend.  One of the kindergarten teachers, familiar with Henry’s Hope (and his little face), also happens to be a high school classmate of mine.  Those tidbits came as a comfort; our kids were among friends and people that cared about them and us.

That comfort remains, but has been jolted by a couple of layers.  The little girl, Emma, has a brain tumor.  That, for me, seemed to be the straw that broke the camel’s back.  It was maddening.  I was furious, enraged, deeply saddened, overwhelmed, and exhausted.  For me, showing the anger is not easy; before, I would bury it completely, dive deep into work or other things that I could “control” – and we all know that it comes out in some way eventually.  Now, having worked for years on this, I can cope with the feelings and deal with them head on.  Much healthier, but unpleasant nonetheless.

You see, we had heard this news – a child with a brain tumor – before.  A friend that I used to work with years ago, had a son – who is famously referred to as Rock Star Ronan.  That beautiful boy lost his battle with cancer at 4.  In following his mom’s blog, that family’s experiences were horrific, almost unbearable, unfair, and overwhelming.  They had gone down a path that we followed them on; we had experienced many similar ordeals and have no idea what they went through in losing Ronan.  But, we will. 

That fact is overwhelming.  So to try to better cope, I took great advice from my therapist and stopped following the blogs that seemed foretelling.  I stopped working directly with Henry’s Hope families, as their stories were too raw for me; our organization would help, but it wasn’t something that I could personally do.  These new coping mechanisms worked well.  And then, another little girl.  Another family who is courageous, but even on the outside you can see their fear, desperation, exhaustion.

So, I took another piece of therapeutic advice.  Distanced myself from those circumstances.  Before, I would not let myself do that – thinking I was being selfish, too self-centered, etc.  But in truth, diving in to help never resulted in a positive outcome for anyone.  And, I was useless to all. 

So, distancing seemed to work.  I was coping.  I was healthy – sleeping, no anxiety attacks, no deep depression, no burying myself in work.  All healthier means of coping.

And then . . . .

My kids challenged me even further!

Lily, being Lily, has befriended Emma and talks fondly about her.  She doesn’t say anything about Emma being sick; she knows all about it, but she talks about her favorite color, what she likes to play, what she thinks is funny.  Far more important things than the things that I’d be angry about or try to help with.  You see, the help that I would always try to provide was in an effort to “fix” things, cure the disease, make the illness more tolerable, search for alternative treatments – all things that I am not equipped to do and that were failures before I even started.

Lily, and the wise children that I see (most are more wise than I), wants to help by just being there.  In being Emma’s friend.  Laughing.  Playing.  Treating her like the kid that she is.  And she’s successful every time.

Lily and Henry recently joined a club that meets after school.  The club partners with Phoenix Children’s Hospital and does things for kids that are sick in the hospital.  Fun things.  Things that recognize that they are kids; not see them as sick.  I’m so proud of Lily and Henry for seeing what’s important.

And Luke Took it Even Further

A couple of weeks ago, I realized that the coping tools that I’ve learned (and continue to) have been put in place just in time.  Because, as a parent (though newly learned), I’m going to have to teach some of these skills to our kids.

Luke and I were having some fun time, and he told me that he loved his school.  When I asked why, he started to cry and told me “Because they have a whole room for the special kids.”  He was referring to the special needs kids.  Then, he said something too familiar for comfort.  Wiping away the tears, he said “Daddy, I want to figure out how to make them fine.  How to cure them.”  I saw myself in him.  The raw emotion that he had was difficult; so, he shut it off – put it away and hatched a plan to make it all better.  He was going to make it so that the overwhelming sadness would go away – because he was going to “cure” all of the special needs kids.  Just like I thought that I could cure him and his little brother.  Because if I thought that was true (even remotely), I wouldn’t have to deal with the reality.

“Luke, they don’t need cured,” I said.  “And we can’t do it even if we wanted to.”  He looked up at me – surprised.  Unbeknownst to me, I had already taught him that we should take affirmative steps to overcome bad things to avoid feeling them at all.  “We can’t,” I repeated.  His shock turned back into sadness, and tears rolled down his face.  I hugged him, and joined him in crying.

“It’s ok to be sad and to cry,” I told him.  Something that I had just discovered in the last few years.  And then, I took a play out of Lily’s playbook!  “We can play with those kids though, help them have fun,” I said.  As he wiped away his tears and took a deep breath, he said “Making them smile is good, right?”

Yes Luke, it is the best.  The very best medicine anyone could want.  I learned it relatively late in life.  But on the hard days – when Henry has a hard time walking, when Luke wonders aloud whether he could die from mitochondrial disease – I treasure each and every smile given to me.

For more inspiring stories, please check out Three Candles – a book about Henry and Henry’s Hope.  (www.henryshope.org or www.threecandlesbook.com).

“Daddy, Can I Have a Wheelchair?”

By Troy Foster

I held little Henry in my arms, his head resting on my shoulder, and his arms wrapped around my neck – when he asked me.  We were almost halfway to the car, both exhausted, sweating profusely, and the “dry heat” proving to be less so than one would hope.  He titled his head, moved his mouth toward my ear, and whispered “Daddy, can I have a wheelchair?”

It shouldn’t have broken my heart, but it did.  It wasn’t as if I hadn’t been prepared.  Just days earlier, Kristen told me that he had asked for a fancy walker or wheelchair so that he wouldn’t get tired so fast.  He didn’t want the long walk from the parking lot of the school to his classroom to tire him out before the bell rang. 

But, I had dismissed the idea then.  I remember saying to my wife, whom I know had just as much trouble saying it to me as I did hearing it, “Well, he doesn’t have to.  We don’t want to push that.  We have to try not to make him any more different.”  The look on her face said it all, and I knew before the words left my insensitive mouth – of course, we didn’t want to push it.  We weren’t.  He was asking, and we couldn’t ignore him.  We couldn’t ignore the reality.  Henry is different.

As these thoughts rushed through my head, Henry grew heavier and I remembered when Kristen and I wished – desperately – that Henry would live long enough to grow so heavy.  Grow to need a wheelchair.  And here we were.

Still not wanting to give in, I asked: “Why do you want it, Henry?  Why not let your teacher pull you in the wagon?”  Not that it mattered, but I guess riding in a wagon felt more “normal” to me.  Henry quietly shared, “Because I want to do it myself.  By myself.”

Of course he did.  His answer made me smile – as I simultaneously held back tears.  Henry wants to play with his friends, learn in his class, and use his energy that way.  He doesn’t want to waste it on getting there.  He just wants to do what other kids his age do – but will have to get there with a little help.  Rest assured, he’ll do it himself though.

It was a busy week.  Sure, we did stuff.  We quickly got the doctor’s order for the wheelchair, discovered the best place for Henry’s needs, and are researching brands, while letting him look at colors and designs. 

The emotional toll was noticeable too.  Henry continues to amaze me; his spirit, his attitude, and his will.  I realized as well that dealing with what might or will happen – is much different when it actually happens.  Though we’ve gone over it in our heads, when it happens, it still burns.  Hurts.  Devastates.

But, I know that the look on his face when he gets his wheelchair and the pride I’ll feel when he’s getting around by himself – will be equally strong on the other end of the spectrum. 

I’m always reminded that we’re truly blessed.  And we’ll take this journey one step at a time – together.  That’s all that matters.

For more stories about Henry, Henry’s Hope (www.henryshope.org), and the special children we encounter, check out Three Candles.  It’s available directly on www.threecandlesbook.com and via Amazon.

The Beverly Hillbillies Meets Gilligan’s Island – Foster Style

By Troy Foster

This Father’s Day is different than any other for me.  I’m not spending it with Kristen and the kids.  Instead, I’m all the way across the country – getting our new home ready for their arrival!  That’s right, the Foster clan is going back to Arizona – Scottsdale, that is.  A lot has happened since my last update.  So, having a little spare time while missing my family on this Father’s Day, sit right back and you’ll hear our tale.  A tale of a fateful trip.” 

The Perfect Storm

I haven’t written for some time.  Not that you would have or should have noticed, but selfishly, my blog serves not only as a way to update and share our journey, but is primarily therapeutic for me.  For the last few months, however, our ship has been a bit lost at sea.  Some of those things, I’ve had no desire to write about or even share.  But, our close friends and family have been so amazingly supportive, and if you’re reading this – you’re one of those people – that I thought it was about time to tell you what has happened – and in a relatively short time.

Nothing.  And at the same time, so much.  It’s a lot like these old TV shows.  When Jed was going out shooting that morning, he had no idea that he’d be packing up and heading to Beverly in short order.  Neither did the tour boat of strangers think that they would be close friends – almost like family – when they stepped on board that ship.  I’m not suggesting that we have struck it rich (we haven’t) – nor am I saying that our journey stranded us on a deserted island.  Far from it.  But, we have been lost at sea; we have met and befriended amazing people on our journey; and we are heading out west – “the place we ought to be.”

Travels Well Worth Taking

It’s hard to believe that we moved out to Indiana almost three years ago.  At the time, we had struggled with Henry’s illness, still didn’t have a definitive diagnosis, and were certain (after doctors here told us) that we needed to leave to find answers.  So, we did. 

While there, as you all know well, we spent an inordinate amount of time at various hospitals – not just for Henry – but also for Luke.  We learned a lot.  A lot that we never really wanted to know.  Things that no parent would.  Henry and Luke both have Complex 1 mitochondrial disease, and it’s degenerative.  The kids’ team was tremendous – in educating us about this horrible and unforgiving disease, in helping us obtain resources in our battles against it, and in reassuring us as parents that we were doing all that we could – all that anyone could when faced with this.  Loving our kids and each other, and sharing our hearts with them every day – enjoying each minute – was the best treatment.  The only treatment for a disease that takes your life – but not your heart and soul.

The doctors were also so gracious in telling us one of the most important things that we will ever learn about this condition:  there are no concrete answers.  They told us that they didn’t know many things.  Given our journey, that uncertainty – though a little disconcerting – was refreshingly honest.  At Henry’s last appointment in Cincinnati, the doctor repeated a message that he had probably said a dozen times – though this was the first that I heard it.  “There is nothing more we can do.”  Hearing that is jarring, and seems ridiculous.  They are doctors; specialists that we moved across the country to be near.  Of course they can do something.  So, I challenged him.  “What do you mean?  He’s only 4 ½ (which he’s almost 5 – but I’m stuck with only half-year ages like all kids that pay attention).”

Dr. Franciosi, who is the second doctor that we moved close to that is now moving away this summer, folded his hands and tilted his head slightly.  Henry was engrossed in the video that they had put on.  Dr. Franciosi smiled warmly, which was nothing unique but felt different that day.  He said that they would watch Henry (and Luke), test them twice a year to see if any of their major systems was deteriorating, and treat any system issue as it arose.  He mentioned that Henry might, at some point, need to have an open line to receive his nutrition.  But, aside from the monitoring and treatment of any issue that comes up (which they have no idea what or when those might occur), there is nothing that they can do.  Nothing.  So harsh.  Final.  Unfair.  (For those of you that know us really well, this has just spurred us on to look at other avenues – look at what other hospitals are doing and light fires under organizations with the brainpower and manpower to change that answer.  But, not at Henry’s expense.)  Because Henry is tired.

Our Little Buddy, and His Family

Henry has always been a trooper.  I’m pretty sure that he will remain the strongest person that I have or ever will meet.  But, he is tired.  Not too long ago, he was always on the go.  Recently, though there are exceptions, he’d rather be at home.  When we visited Kristen’s parents, he was always fired up about going on the morning walk and heading to AJ’s.  Now, he’d rather stay in.  When he’s out, he’ll have his fun, but is not shy about telling us that it’s time to go home.  He’s tired of Henry’s Hope events and book signings – both would light him up just several months ago.  And when we’re home, Henry will now tell us to take him to bed – where he falls asleep next to us as soon as his head hits the pillow.

Henry is tuckered out, and he has every right to be.  So, our pace is changing.  Our focus, which has always been on our daily enrichment as a family, remains there – but seems even more important.  Spending time with friends and family seems to have a greater urgency – that we’d rather not admit to ourselves, or even say aloud.  But it is a reality. 

And to that end, there are a couple of other factors.  Kristen’s dad, Art, has another awful disease – Parkinson’s.  Henry and Art have always had a uniquely close relationship.  They have their own language, it would seem.  And they truly worship one another. 

Henry’s Uncle David is another shining light in his life.  He and his wife currently live in Tucson, but are often up to the Valley.  And, just as they adore Uncle David, the kids all have a special place in their hearts for their Aunt Lolo, Uncle Todd, and the Johansen cousins.  They live a day’s drive away from Arizona.  Before moving to Indiana, we saw them pretty regularly.  And, it would seem that being with family is not something that we can do later.

One other item that I rarely let myself think about (quite selfishly), is how tired my beautiful bride is too.  I’d give anything not to see that.  Don’t get me wrong, I’m tired too – I just avoid looking in the mirror.  But this amazing wife and mother gets up every day, puts her smile and game face on, goes out to tackle the world – all the while torn up inside.  Having the support network of her family, and seeing the kids spent time with them, might change things a little and give her some comfort – like I think it will me. 

Strangers Turned Family

While leaving now is certainly the right thing to do, it certainly tears at our heartstrings too.  While in our little town of rural Indiana, we found something that we didn’t expect – a community that has opened its arms to us and treated us like members of their own families, teachers that know and love our kids (and us), friends that have given so much of themselves that we’ll never be able to thank them enough.  We cannot say goodbye; we won’t.  Just see you later, and know that you have a place to visit us in Scottsdale!  

No Mansion, Not a Millionaire, But Do Have  a Pool

Yes, we still have to work.  But this is how I think we are guided on certain paths (or hit over the head in some cases).  After the doctors that we moved near moved, and after the conversation at the last appointment, and after seeing Henry tired, and after seeing Kristen grow miserable in her professional work – I have been given an amazing opportunity.  A client that I had worked with for almost twelve years had an executive position open up in house, and of course, it’s in Phoenix.  Meanwhile, Kristen is still in the practice, but actively looking to serve her home State of Arizona and its children; and she’s getting more than her share of nibbles.  It is all coming together nicely.

So this week has been about getting the house ready, and it’s almost there.  Kristen is on the other end of things getting our current house ready for the moving truck and for sale.  I head to Indiana on Thursday – where we will celebrate Henry’s 5^th birthday on Friday.  Then, I’ll fly back with two of our kids to Arizona one week from today.  And Kristen, accompanied by Kiki, our trusted friend and truly part of our family whether she likes it or not, will drive out with the other half of our clan.

We are sad to be saying “see you later” to our wonderful New Pal friends and can’t thank you enough for giving us the love and friendship that you have and will continue to.  But we are extremely excited to be going to get the best – maybe the only real medicine – that Henry, Luke, and our whole family needs – to be home.  And to be with our family.

Dedication:  This post is dedicated to Mylee Eaton, and her tremendously brave and loving family.  Mylee’s mom and I have been friends through the horrible disease called mito.  Mylee had many symptoms similar to Henry’s; but like Henry, she would light up a room.  A few weeks ago, Mylee took a turn for the worse.  And this morning, she passed away.  She was surrounded by her family and loved ones, and am certain that she is without pain now.  Please keep Mylee, and the Eatons, in your thoughts and prayers.  And go hug those that you love.  Do it again tomorrow, and the next day too.

To volunteer or donate to Henry's Hope, go to www.henryshope.org; to purchase Three Candles, go to www.threecandlesbook.com. 

Good Times - Really!

by Troy Foster

I’m not even joking.  You’ll think I’m crazy or pulling your leg after you hear about our last few days, but I mean it with all sincerity.

Today and The Day Before

I almost forgot the constant whirring noises of the machines, the bright lights, the doors constantly opening and shutting, and the parade of people coming in and out – just when things get quiet.  But, as I sit here, the familiar sounds of the IVs, heart monitors, and sites of the blinding lights and nurses and doctors asking the same questions as those before them – harken me back to when Kristen and I regularly lived in hospitals.  Today, it’s not Henry, but our little Eli that is sick.  He’s dehydrated, has some stomach things, and is in for observation, tests, and fluids.  Poor little man is sick, but he’s going to be fine soon; I just know it.

We also had a little scare with Eli's Crankaw yesterday.  He was in a car accident that could have been so much worse than it was.  The car wishes that it looks as good as Crankaw.

Last Weekend

Every single member of our family, save me, has been sick with a stomach flu off and on for the last week.  Poor Kristen was hit hard.  So there has been some form of clean up underway at our house at a near constant pace.  Oh, and just in time for our new carpet – that we got a few weeks ago.

Our poor dog, Atticus, has a seizure disorder and that flared up too.  So we have him drugged up pretty good on Valium and Phenobarbital.

The Boys’ Check Ups

Henry and Luke have recently been to the cardiologist and neurologist.  Not terrific news.  Henry’s muscle weakness has gotten more pronounced, and they think that Luke might have an arrhythmia.  Neither of those are critical, but just steps in a direction that we’d rather not take.

So What’s Good?

Now, I’m not going to say that any of this was exciting or something that I hoped would happen.  And, I would probably forgive myself (and that’s saying a lot) for being a bit down, if I was.  But, I’m not.

Maybe I’m crazy, and if that’s what it is, I’ll take it.  However, I like to think that I was open to seeing, and enjoying, the good:

·               Henry, Luke, and I made adventures out of our trips to Cincinnati.  There were secret spies, special lunches, sing-a-longs, and a detour home for a book signing.  The doctors visits happened, and the news is not lost on us.  But, what we all remember is how much fun we had.

·               We’re getting ready for Henry’s Wish trip to DisneyWorld – in between the cleaning.  And when Henry and I went to go get our haircut yesterday, Wendy (a good friend and owner of the shop) said “Keep your money for DisneyWorld.  Let me treat you to something.”  Henry said what I was thinking: “Wow, thank you!”  That was so unexpected, unnecessary, and kind.

·               The way he runs around, you would have no idea that Atticus is having health issues.  He’s enjoying life even though he has some hurdles right now.

·               Even now, as little Eli rests with the medicine and fluid doing its work, I sit here thinking about him, what a hoot he is, what fun he’ll have in DisneyWorld, and even the future.  He’s been cuddly because he’s sick, and extra sweet.  Not things that I would have experienced if things went as I planned today.

·               A good friend of ours is picking up our kids at school, their kids will have fun with ours, and help us out a bit.  People are great.  And it just made me think that we need to get those kids together more often when there isn’t a need.  They are close and no reason not to nurture that.

       My father-in-law, who means the world to so many - is back to doing his paperwork today.  I was so happy to hear that this morning.

 

So, good things are all around.  Sometimes, it seems, we just have to be mindful of them and search a bit harder than other times.  It reminds me of a verse from the Bible that I just read coincidentally – that discussed how we have the choice each day to “choose life” and enjoy it for what it is – that day.  Without worry about the future, dwelling on the past – but enjoyment of today.  Deuteronomy 30:19.

So today – a hard day in a string of challenging ones – I choose life.  And I choose to look at the good, and enjoy what I have today.  I hope that I have the strength to keep making that choice each day.  And remember to do it on the good days too!  If I just take a cue from this kid (pictured below), who could easily choose to be mad, sad, or angry.  But he just keeps on enjoying the good times.