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” 

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