Monday, August 23, 2010

You Never Give Me Your Money / I've Got A Golden Ticket

Yesterday we received a letter from our insurance company detailing the costs for last month's Lumizyme treatments.  As I looked down at the amount we owe now that we've met our deductible, I reached for my insurance card, grabbed Maddie's hand, and became Grandpa Joe from Willy Wonka and the Chocolate Factory dancing and singing away to...

I never thought my life could be
Anything but catastrophe
But suddenly I begin to see
A bit of good luck for me

'Cause I've got a golden ticket
I've got a golden twinkle in my eye

I never had a chance to shine
Never a happy song to sing
But suddenly half the world is mine
What an amazing thing

'Cause I've got a golden ticket

I've got a golden sun up in the sky

And then I started to wonder what the insurance claims specialist must think when they receive yet another invoice from CHOP for those darn Crowley girls.  I imagine it goes something like this...

You never give me your money
You only give me your funny paper
and in the middle of negotiations
you break down

I never give you my number
I only give you my situation
and in the middle of investigation
I break down

It's clear that this little thing called Pompe Disease, like many struggles in one's life, can be viewed in different ways.  It can weigh you down, force you to question everything, embolden you to fight, or make you sing and dance.  While we have faced many feelings along the way, today Maddie and I were glad to be on the side of Grandpa Joe. 

'Cause I've got a golden ticket
I've got a golden chance to make my way
And with a golden ticket, it's a golden day

All the best,

Credit to:
Roald Dahl, "I've Got A Golden Ticket"
The Beatles, "You Never Give Me Your Money"

Thursday, August 19, 2010

The Fork in the Road

The AMDA publishes a regular newsletter and contacted us for an article about our experience. Many of you already know the story, but I thought you might be interested.

As a younger man I drove the finely paved Los Angeles freeways with ease. Like millions of others, I merged in and out of traffic, easily transferring from one on-ramp to the next at a speed only matched by the pace of city life. Everyone around seemed to follow the same path, eyes on the road, never stop to look around, and never look back. 

Every so often I would notice a strange sight at a fork in the road. A car would have crashed right into the divider between one freeway and another. Why did this happen? Was it because the person was not paying attention, were not sure which direction to go, or were they frozen when forced to make a choice they weren’t prepared for? Whatever the reason I admit I always drove by with a bit of confusion and a bit of humor. After all, doesn’t everyone know which direction they’re going?

Since those days in LA, I met my wife, was married, had three beautiful children, and headed off onto the freeway toward a normal life. On November 18, 2009 we crashed full speed into that fork in the road. We were not driving. We were sitting in the Muscular Neurology office at Children’s Hospital of Philadelphia. On that day we learned our youngest daughter Madeline was diagnosed with something called Pompe Disease. We had no idea what this was and were immediately humbled by the story coming from the doctors.

Over the following months, buoyed by the support from family and friends, we grew to better understand what we were facing and even regain a positive view on the future, even if it was to be different than we expected. We started a blog to share our story, built relationships with other Pompe patients and parents, and pondered how we could make a difference. That was until February 10, 2010 when that fork appeared again and we learned that our eldest daughter Emma was also diagnosed. Words could not express the shock and sadness we felt at that moment. 
Just as we were trying to understand and deal with the news, something happened that picked us up.

Three days after learning she had the Pompe Disease, Emma’s Facebook post changed to the line “Then you begin to make it better” from The Beatles song Hey Jude. While Donna and I were still trying to put one foot in front of the other, Emma was ready to fight. Looking back, I shouldn't have been surprised by her strength and conviction, but reading the post still brought tears of joy to my eyes.

In August 2010 are we back on that freeway speeding away toward a normal life? No. We made the choice to take that unpaved fork in the road and embark on our Pompe journey with positive hearts and a fighting spirit. To our surprise, that car of ours has become a bus filled with members from the Pompe community, CHOP, Genzyme, and a support network of family and friends which continues to amaze us.
So while we’ve learned that speeding to the destination may be valuable for some, we found the road less traveled, while frightening and hard on the soul, can be more beautiful than ever imagined. 

Thanks for sharing the ride with us,

Sunday, August 1, 2010

California Dreaming

All the leaves are brown,
And the sky is grey,
I've been for a walk,
On a winter's day

I'd be safe and warm,
If I was in L.A.,
California Dreamin'
On such a winter's day

Last Sunday, Emma boarded a plane to Sunny California with my sister and niece. She is having a great time enjoying the So Cal beaches, great Mexican food, San Diego, shopping, Los Angeles, In-N-Out Burger, Santa Barbara, and most On Tuesday she'll take her first flight alone and be home just in time for treatment.

On August 1st last year we had just returned home from two great weeks in California topped off by my nephew's wedding in Santa Barbara. To remember the trip I sat down with Donna and created a video to share some great photos from our vacation. This was before we knew anything about muscle biopsies, genetic testing, Pompe disease, or Myozyme. It was also before this blog, our wonderful doctors, and the love and support of many friends.

Yesterday, Emma attended a baby shower for that same nephew's bride.  Although I've never been to a baby shower, I am confident the room was filled not only with little sandwiches and cake, but also with the excitement only a new child can bring and talk of a wonderful future for the new family.

Another year has past and as usual it will end with disappointment for some and joy for others.  Despite all the craziness this past year has brought us, I'll choose the side of joy.  I do so because regardless of Pompe I know our kids would still be out in my brother's yard today dancing with smiles on their faces and California Dreamin' in their hearts.

Where's the sunscreen?

Credit to: Mamas and The Papas, "California Dreaming"