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).