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....

18 comments:

  1. Here's to the strength, courage, and beauty of not only Emma & Maddie, but all the PA Crowleys. The day went perfectly smooth because of all the love, research, preparation, and tears that Matt & Donna poured into it. There was never a doubt that it would go as it did. There was never any other option. I am so proud to be a Crowley!

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  2. Lee Coral and FamilyMay 1, 2010 at 1:13 AM

    We are so pleased all went well not only for the girls, but for you the parents as well. One step at a time and a huge hurdle is now past.

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  3. Sounds a lot more fun than the boring old adult infusion center that I'm stuck in! :) Glad to hear it all went well!

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  4. Look at my beautiful girls...every bit the Princesses you were born to be!! Day one is down and now the rest of your lives begin. Always know how much we love you and how very inspired and proud of you we are. You've got a heck of a support team, starting with your Mom and Dad and Carter-man...all these amazing folks at CHOP and the "California Contingency"...yep, your crazy relatives in SoCal and NorCal...we've got the place covered!! XOXOXO

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  5. Gals you look great.... you are great and you are doing great.......Thinking of you all the time..... Sun shining, flowers blooming, loved ones all around, all is good.
    xoxox....

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  6. I enjoyed reading the blog and seeing the pictures. i am glad to hear it was a positive experience and all the nurses and doctors were good to you. Your family continues to be in my prayers. Love,
    Janet Sisco

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  7. Hi Crowley Princesses!
    We were thinking of you on the 28th. Love to you!
    The Scoons

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  8. The girls look like they are in good hands. I'm so happy that they have a wonderful support team between the staff and of course their family. Thanks for sharing the pictures.

    Sincerely,

    Nina

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  9. You make me happy when skies are gray.
    Please don't take my sunshine away.

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  10. I hope that today is somewhat normal for you. Work, Homework, maybe a game or practice, scramble around for dinner, mazie has an accident on the rug, some bills came in todays mail, ask each other if you are are feeling froggy, take the trash out, watch fredo grind. You know.... normal.

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  11. Thanks for sharing your day with us - you make me so proud to be family! You are always in my thoughts and prayers and I know that God is holding you all in his hands and giving you support! I love you!

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  12. So glad to hear that the first treatment went well. I continue to be awed by your entire family.I hope Wednesdays continue to be wacky and fun!!
    Maribeth Shea-Droese

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  13. what a great story you tell of "the big day". The girls look great! I especially like the tierras (did I spell that right)? Princesses, they both are. Prayers continue for you all!

    The Egnaczyk Family

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  14. “...perhaps all the dragons of our lives are princesses who are only waiting to see us once beautiful and brave. Perhaps everything terrible is in its deepest being something helpless that wants help from us.”
    elikaroi Rainer Maria Rilke

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  15. You can lay down and die, or you can get up and fight, but that's it -- there's no turning back."

    --Jon English,
    Australian musician, actor and writer

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  16. Happy Mothers Day to Donna.

    A mother is a person who seeing there are only four pieces of pie for five people, promptly announces she never did care for pie. ~Tenneva Jordan

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  17. You don't really understand human nature unless you know why a child on a merry-go-round will wave at his parents every time around - and why his parents will always wave back. ~William D. Tammeus

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  18. Your brother, Mike really said it better than I could have... namaste...

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