Tuesday, May 31, 2011

Strawberry Fields Forever

Let me take you down
Cause I'm going to Strawberry Fields
Nothing is real
And nothing to get hung about
Strawberry Fields Forever

Living is easy with eyes closed
Misunderstanding all you see
It's getting hard to be someone
But it all works out
It doesn't matter much to me

Shortly after we moved to the East Coast we built a small garden at the end of our driveway so the kids could grow vegetables and we could see progress each time we came home.  With our neighbor’s help, we built the outline with railroad ties, secured the base with spikes, and added small seats at each corner so the kids could sit and plant or just sit and enjoy time with their achievements.  We had no intention of securing a food supply for the next natural disaster or becoming organic farmers.  This was just your normal small garden so we could bring a bit of country into the suburbs.

Over the years the garden has produced chives, lettuce, tomatoes, eggplant, zucchini, and even a pumpkin or two.  There were years in which it thrived with activity and years in which it laid dormant waiting patiently for the next season.  What has been interesting is that while each planting and harvesting season past only one item remained behind, quietly battling the elements.  As the garden became covered in fall's leaves, winter's snow, and spring’s pollen, the one crop that continued to fight and continued to survive were strawberries.

Since the moment of Maddie's diagnosis with Pompe in November 2009, our lives have been turned upside down.  While the grass continued to be cut, and the flowers continued to be watered, the thought of taking care of anything else was a too much to handle so the garden filled with weeds.  This became somewhat of a symbol for our life.  From far away everything looked fine, but as you got closer you could see that weeds were eating away at the very soil which was supposed to nourish us.  Here we were living on the East Coast, 3000 miles from our family, facing the toughest challenge we had ever faced, and wondering why we were here. Why had we found ourselves so far away from our family when we needed them most?  There were many days we wanted to leave those weeds behind and head back to sunny California with the hope that things would be better or at least easier.  But, despite the pain, we knew we were here for a reason and we had to find out why.

During the past year, sometimes I would walk over to check out the garden and think about life.  Occasionally, I would even pull a few weeds and sweep up a bit of the mess.  I did not do this for the good of the soil.  I did it for the kids so they could see that it was healthy and that one day it would return to full bloom.  Curiously, as I did this I noticed that almost everything had disappeared into the soil after the harsh winter except for the strawberries.  Despite the weeds, the weather, and the disrepair, the strawberries held firm, spreading across the garden on their own, almost to say, “You can’t get rid of me that easy!”

This always made my smile because as a kid growing up in Southern California I fondly remember stops at the strawberry fields and purchases of boxes and boxes of strawberries.  I remember my mom preparing them along side pound cake and whipped cream because that was my dad’s favorite dessert.  As I got older and we moved to Northern California, I remember driving along the road near our house and watching the men and women toiling in the strawberry fields.  From afar it seemed that they took care to move, plant by plant and check if they were healthy, if they were strong, and if there were ready to be set free.

A couple weeks ago Maddie and her friend approached Donna and asked if they could take over the garden this year.  They said nothing had grown last season and they had some ideas to make it better.  We responded with a resounding “Yes”, but before they could plant we would need to clean it up.  As usual, Maddie was five steps ahead and already had a plan.  Over the next few days, in between school, sports, music, and everything else that seems to fill a kid’s lives these days, she squeezed in gardening.  Bit by bit, she cleaned out the weeds until all of them were gone.  Then she came across the strawberries.  I did not tell her what to do with them, whether they needed to stay or needed to go.  It was her garden and her choice. 

When I came out one afternoon to check on her progress I was surprised.  Rather than taking the easy way out by clearing everything with a rake and starting new, Maddie had decided that the strawberries needed their own place to shine so she separated the garden in two.  Painstakingly, she dug up each wayward strawberry plant and brought them back to where they were originally planted, back to their friends.  Her logic was if they were together they could grow stronger and healthier.  I couldn’t help but smile as I was taken back in time.  Just like those men and women I had watched years before, she went plant by plant, took care to check if they were healthy, if they were strong, and if there were ready to be set free.  Doing so, she was making a quiet statement.  It was a quiet statement to Pompe and to each and every little change the last two years has brought us.  “You can’t get rid of me that easy!”

A few days later we took Maddie and her friend to the garden store where they picked out fresh soil and their vegetables for the year.  They chose lettuce, tomatoes, cucumbers, basil, and a few cayenne peppers just to “make it spicy," she said.  Later that day they tiled the soil, planted their new crops, placed the little markers by their side, and watered away.  Since then, they have closely monitored their new garden watching for all signs of growth and looking forward to a strong harvest. 

I must admit the garden looks a lot better than it has for the last couple seasons.  It is full of life and full of promise.  It’s funny how a little plot of dirt has made me think the same about our life.  Yes, we are still 3000 miles from our family, but it’s OK.  We are now only 35 miles from the best doctors and nurses at CHOP, only a two hour flight from our University of Florida based support team, and a just a short distance from friends who have become our family.  We are here in the land of cheesesteaks and Rocky movie fanatics for a reason.  We are here because this is where our kids will get the best medical care and because they are growing up at a pace that reminds us of our youth.  We are here because fate has planted us here.

We have been given a choice, a choice to let weeds grow or like our strawberries, a choice to look adversity in the eye and say, “You can’t get rid of me that easy!”  Thanks to a little girl and her innocent actions, we’ve decided to stay.  Sure, we still miss our family deeply and wish they were here by our side, but if Maddie is ready to bloom where she has been planted we are too. So, if you have time this summer, and don’t mind some home grown strawberries, drop by with some shortcake and whipped cream.  You’ll find us at the end of the driveway, gloves in hand, singing...

Strawberry Fields Forever
Strawberry Fields Forever
Strawberry Fields Forever

Stay strong!

Credit to: The Beatles, “Strawberry Fields Forever”

Sunday, May 22, 2011

Homeward Bound

I'm sittin' in the railway station
Got a ticket for my destination
On a tour of one night stands
My suitcase and guitar in hand
And every stop is neatly planned
For a poet and a one man band

Homeward bound
I wish I was
Homeward bound
Home, where my thought's escaping
Home, where my music's playing
Home, where my love lies waiting
Silently for me

In Good Day Sunshine I wrote about a family that loaded up a car with their hopes, fears, and lots of prayers and headed out on a new adventure at CHOP.  I wrote about a family who started an adventure which they never wanted to take nor anticipated. And, I wrote about a family whose children faced their adversity with such grace and strength that a father would never be the same. Just over one year later those car rides will be coming to an end and a new adventure will begin. That family is Homeward Bound.

I write today about “that family” because so much has happened over the past year that it is hard to remember what things were like before.  Sure, the big events are clear, but the little concerns and issues have washed away.  When we unexpectedly departed that plane in Holland instead of Italy we found a strange world, but also one with wonderful views and wonderful people.  I never could have predicted those wonderful views were first seen at a little place called Day Medicine in The Children’s Hospital of Philadelphia.

At day one, the goal was to have the girls infused at home.  From our earliest meetings the benefits were clear.  Home infusion would allow the girls to be in their own environment instead of a sterile hospital ward.  Home infusion would allow them to relax, which they could never do in a cold hospital room.  And, home infusion would remove the anxiety that naturally comes with spending anytime at the hospital.  All of this made perfect sense until that first day at Day Medicine.

To say we found things we never expected is an understatement.  Sure, we did not expect to have a room to ourselves or individual TVs and video games.  We also did not expect to have free internet or a great coffee place just downstairs.  These were nice perks, but meant nothing once we met the staff of Day Medicine.  From the moment we entered the wing to see Jackie dressed for Wacky Wednesday, Kate’s smiling face with a Polaroid camera in one hand and arts and crafts in the other, and Barb’s soothing and supportive tone something told us the girls would be OK.  When their first infusion of Myozyme was started and the normal operations continued at Day Medicine we were struck.  This was not the sterile hospital ward we were expecting and this was not the hospital staff we had seen so many times before.  This place was different.

If you have read this blog in the past you surely have come across a story here or there extolling the wonders of CHOP.  You may have even read with a smirk on your face wondering if the writer had both oars in the water.  After all, this was the U.S. medical system that we all hear so many bad things about.  Sure, this it is not Disneyland, but if you have had a chance to spend the day with us in Day Med, you too would be a believer.  This is a place where miracles occur and magic happens.  This is a place where fear and pain are replaced by confidence and power.  This is a place where we built friendships, grew as a family, and a place we cried as we departed.

After lots of hard work by the teams at Genzyme, CHOP, and Aetna, the girls will begin home infusion next Tuesday.  No longer will Mom and the girls need to load up the car every other Wednesday, miss school for a day, and head into Philly.  Instead, they will be able to take in a half day at school and receive their infusions in their own house.  They will be able to walk into their own kitchen, spend time with their friends in their own yard, and rest in their own bed.  The benefits are clear especially for school.  Like any kids that regularly have to miss school for events like ours, a never ending cycle of catch-up occurs.  The school district has been very supportive, but missing two days a month is a struggle as classes continue when they are not there and homework builds up.  This had lead to many late nights and sleepy mornings especially for our High Schooler.

What are the benefits of home infusion for Mom?  While we focus so much energy on the girls and their sacrifices, I do not want to forget the one who continues to make this all happen.  Mom has been the silent soldier through this whole process, sacrificing her time to take the girls wherever and whenever they needed.  She quietly leads the family through the sea of insurance paperwork and gasoline bills while still finding the time to prepare a dinner so everyone had a warm meal at the end of treatment day.  With summer on its way and everyone out and active, this could not have come at a better time for my wife who is just a little extroverted.  The winter blues are quickly washed away with a few good days in the sun and I don’t want her to miss any.

So, what are the details?  Well today we will receive 36 vials of the magic medicine, a couple IV pumps, and miscellaneous supplies from our friends at FedEx.  Those vials will quickly take precedence over the containers of butter and jam in our refrigerator as they need to remain cold until mixing.  The IV pumps will be set aside in a convenient place so they do not disturb our daily life, but are easy to come by when needed.  Our new home infusion nurse arrives Tuesday morning and will spend the day with us.  Through some heavy lifting by the team at Genzyme, we have been able to secure the services of Adam who has been infusing other patients for years and is praised as a “great guy” by some reliable sources.  As we will be inviting a stranger into our house with the hope he will become part of our expanding family, I’ll take the “great guy” recommendation as a sign of good things ahead.

I’ll stop here about the next step in our Pompe adventure.  I know there will be many stories to tell over the next year and I will let them develop as so many more have before.  What I will do is take you back to our last day at Day Medicine.  That last day I arrived a bit late, in time for lunch and to spend some time before the girls were discharged.  As I entered I found Maddie and Kate in their usual place, side by side in the craft room laughing away.  Kate, understanding the emotions of the day, looked at me with a “please don’t go there” face and explained that her and Maddie were going to finish every craft in the room before our stay in Day Med came to a close.  As I came across the rest of the staff, everyone said hello knowing today was our last, but then were off to make another child’s day special.

When the last of the Lumizyme was infused and the last of the flush was done, we were surprised by our Day Medicine team with teary eyes, big hugs, and a “We will miss you!” cake.  It was at that moment that I was hit with a mix of sadness and joy.  I fully expected the sadness because at one of our weakest moments these people lifted us up with their laughter, their support, and their love.  They lifted us up when we did not think it was possible and helped carried us to a place of hope and determination.  I wasn’t expecting the joy until I realized that it was not an end, but just a new chapter.  We may not see them as much as we like, but we will pop in every time we are at CHOP and know that if we ever need them they are only a call away. 

As Donna’s uncle once told us, “I never say goodbye because that sounds permanent.  I choose to say, until next time.”  So to all our friends at CHOP Day Medicine we wish you a very special “Until next time.”  We will be thinking of you next Tuesday as we open the new chapter in our lives.  Please know you are always welcome in our home because you are family.  And please know that we will try to recreate some of the magic during our new chapter which will finally place our girls… 

Home, where my thought's escaping
Home, where my music's playing
Home, where my love lies waiting
Silently for me

All the best,

Credit to: Simon and Garfunkel, “Homeward Bound” 

Please click here to watch a video of our days at CHOP.  
After hitting "Play", click the lower right for full screen.


Monday, May 16, 2011

Stand By Me

When the night has come
And the land is dark
And the moon is the only light we’ll see
No, I won’t be afraid
Oh, I won’t be afraid
Just as long as you stand, stand by me

I haven’t written too much about our son Carter.   Maybe it’s because he has enough to manage as the big brother and maybe it’s because I wanted to keep him away from the attention.  But, after his eighth grade chorus class sang Stand By Me, a post stuck in my head.  Whatever the reason, today is his day and it is well deserved.

Carter has the good fortune and the misfortune of being the only boy stuck between two sisters.  The good fortune part the deal is threefold.  First, he doesn’t have to compete with his brothers for the biggest eater, strongest wrestler, or best joke teller like I did (and lost on all accounts).  Second, he doesn’t have to share Dad’s attention for his lacrosse and football games.  And third, he is close enough in age to eventually date both of his sisters’ friends two years older and two years younger.  From the viewpoint of a guy whose only sister was out the door by the time he knew females existed and whose brothers were more interested in heavy metal and car racing; this is not a bad position to be in.

The first part of the misfortune is not much different than the challenges any boy who has one sister knee deep in teenage land and another at the door waiting to enter does.  These include sharing one bathroom, dealing with crazy emotions, too many shopping trips, and lots and lots of hair products.  Fortunately, he has a great sense of humor and much better hair than I ever did.  I can’t think of a day when we haven’t laughed as a family listening to one of his stories, one of his jokes, or watching him flip his hair over and over until the right moment when the flow was just right.

However, when you peel back the misfortune side further you’ll find it’s a bit more complex.  He sits between two girls with a genetic disorder he doesn’t have.  He sits between two girls whose Pompe disease management has transformed a normal home into an insurance processing center, a diet and exercise haven, and eventually a home infusion wing.  And, he sits between two girls and sometimes quietly worries what the future will bring.  This last point became most evident in a discussion we had where he expressed concerns about the future.  He wanted to know what the years ahead will bring for his sisters and what he will need to do.  He wanted to know how strong he would have to be when we were no longer here to help them, guide them, and advocate for them.  He’s convinced that one day he will need to stand up for them.  He just wanted to know how tall he would have to be.

As you can imagine, this is not the kind of conversation you want to have with a fourteen year old boy.  Fourteen year old boys should be spending their time thinking a little bit about school, a little bit about sports, and a little bit about girls.  If they are thinking about their future it should be planning out whether they want to be a professional baseball or football player, not caregiver.  I guess his feelings are not unique out there.  I’m sure there are quite a few brothers and sisters who watch their siblings struggle along and wonder why not me.  They wonder about the future and worry what it will bring for their family.  I try not to get sad by much, but this makes me sad.  A parent’s job is to share the joy of their children and carry their burdens when necessary.  This is what my parents did and this is what we will do.  Our children are not meant to worry about such things.  Our children’s job is to be children.

I’ve thought a lot about wishes these past two years.  When I was a kid, I wished big each time I blew out the birthday candles.  Occasionally, I even asked God for a new bike or G.I. Joe while everyone else at church appeared to be in serious prayer.  Heck, why not try since the big guy was listening anyway?  These days my wish is a bit more focused.  My wish is when my girls are old and gray they will sit down with their brother, look back on all this Pompe talk, and wonder what the fuss was all about.  They will be healthy as can be because some great treatment or maybe some great cure will have made Pompe as serious as indigestion.  They will look back, think about their long past struggles and remember that when the times were tough and they needed support, their brother was there to hold their hand, pick them up, and tell them…

You won’t cry, you won’t cry
No, you won’t shed a tear
Just as long as you stand, stand by me

All for three and three for all!

Matt Crowley

Credit to: Ben E. King, “Stand By Me”