Friday, April 30, 2010

Good Day Sunshine

Good day sunshine
Good day sunshine
Good day sunshine

I need to laugh, and when the sun is out
I've got something I can laugh about
I feel good, in a special way
I'm in love and it's a sunny day

Good day sunshine
Good day sunshine
Good day sunshine

Waking up to a sunny day should have been the first indication that the girls' treatment was going to be ok.  You see we have had a cool spring this year with only the occassional warm, sunny day and this day looked to be a good one.  We woke the kids up early with the goal to reach CHOP by 10.  I worried the girls might be a bit hesitant, but I quickly realized this would not be a concern when Maddie screamed out a "Yeah!" when I told her it was the day for the first treatment.  I don't think Genzyme needs to make commercials for Myozyme, but if they do I have a spokesperson in mind.

On the way down the PA Turnpike we received a call from the Day Medicine nurse making sure the "Crowley girls were on their way".  Apparently they had to make sure we were coming before mixing up the medicine.  Someone in their pharmacy (and accounting department) feels it is best to do this before mixing up $15,000 worth of medicine.  We had to laugh because at some point it all sounds like Monopoly money. 

We arrived a bit early at the hospital and were met with a warm hello from the Day Medicine staff.  We were immediately whisked off to a corner room and the royal treatment began.  Kate, the Child Life Specialist, took time to talk with them about their concerns about treatment, take funny photos for their CHOP scrapbook, and began a relationship that is sure to last for many years.  We then met the nurses who quickly started the I.V. lines after taking several blood samples.  Within 30 minutes Emma and Maddie were hooked up to their I.V. poles with the magical Myozyme drug and the drip began.  What seemed to be so normal for the nurses was a sudden indication for us that the girls had taken the fork in the road toward a better future.

Over the next several hours we were visited by several people that kept the time passing quickly.  First there was David O'Connor who is Genzyme's specialist supporting CHOP, an ordained Deacon, and a peaceful man who we now consider a friend.  He fully embraced Wacky Wednesday by showing up wearing a tux with a questionable tie and cumberbom matched with worn tennis shoes.  Second there was Irene who will be our main contact for all things at CHOP.  Third there were the various nurses including Jackie with her reindeer antlers. And finally Dr. Bonnemann and Livija, the masterminds that got us to where we are today.  These two will have my never ending respect and appreciation. 

The girls passed the time in the craft room, playing games, reading and napping all the time wearing their princess tiarras.  When Maddie was first diagnosed Donna told her she was a Pompe Princess and the name stuck.  Donna visited, texted several people, and was able to connect to Facebook in order to send some updates and see what was happening in the world.  I checked some emails, did some food runs with Carter, checked with the girls over and over, and watched the medicine drip by drip.

Six hours later we were packing up and heading out the door with a pleasant "see you next time" departure.  So strange, yet so perfect.  When I look back I am left with an overwhelming feeling of pride at two girls who took on the day with joy, strength, and courage.  While they had every reason to be afraid and concerned, they chose a different path.  A path which made the day easier for their brother, mother and father and by which they've clearly explained that they will not take this diagnosis lying down.  These two are fighters with a strength which continues to inspire me.

Keep fighting my darlings.  Despite some tough roads ahead I know you will be victorious against Pompe.  Bring on the good days and bring on the sunshine!

All for two and two for all!
Matt

Good day sunshine
Good day sunshine
Good day sunshine

Credit to: The Beatles, "Good Day Sunshine"

Here are a few pictures of our Wacky Wednesday.  Enjoy.


Maddie ready to go!


Emma hooked up to the magic meds.


David O'Connor and Irene.  Love the wacky bow tie!


Dr. Bonnemann and Livija Medne.  Thank you!


Nurse Jackie and the girls.


One day down....