Friday, March 26, 2010

If I Had A Million Dollars

If I had a 1,000,000 (If I had a 1,000,000)
I'd buy you a house ( I would buy you a house)
If I had a 1,000,000 (If I had a 1,000,000)
I'd buy you furniture for your house (maybe a nice chesterfield or an ottoman)
If I had a 1,000,000 (If I had a 1,000,000)
I'd buy you a K-car (a nice Reliant automobile)
If I had a 1,000,000, I'd buy your love

In 1992, The Barenaked Ladies released their song "If I Had A Million Dollars".  I imagine many of you have asked yourself this question at least once in your life.  It's natural.  After all, a million dollars represents a carefree life of luxury.  As kids we saw it again and again on TV from the Clampetts moving to Beverly Hills to George and Weezie movin' on up to a deluxe apartment in the sky.

As newleyweds, this question came up once in a while especially after returning to that little apartment after a long day of work.  Fortunately, it never set in too long because we were happily distracted with the things that money couldn't buy - family, good friends, and one, two, then three babies.  After all, what would we spend that money on anyway?  Eighteen years of marriage later we finally have the answer.

On April 28th the girls will start their Myozyme treatments!  It's taken a while, but we are so relieved treatments are around the corner.  OK, so how does this tie into 1,000,000?  Well, when we first found out about Madeline a good friend came by and asked if we knew how much the annual treatments cost.  It hadn't crossed our minds, but I know this industry so I guessed.  Let's see... does it have four zeros?  No.  Five zeros?  Closer.  Six zeros? That's the one.  Yep.  A child's Myozyme treatment is $200,000 per year!  Now I will never be a math professor, but even I could calculate 2 kids x $200,000 per year, for the rest of their life. 

After the doctors confirmed this amount and we entered the highway leaving CHOP, Donna turned to me and asked the dreaded question... "how?"  In a heartbeat we came to the same conclusion.... "by any means necessary".  Since that time, things have settled out and we've found that our insurance card is our version of the lottery ticket we never picked.

So while the girls' diagnosis has made us ask ourselves many questions we weren't expecting, it has answered at least one question for us.  So if you come across "If I Had A Million Dollars" while searching the FM dial you'll know the answer.

Matt

Credit to: The Barenaked Ladies, "If I Had A Million Dollars"

Saturday, March 13, 2010

Here Comes the Sun

Little darling, it's been a long cold lonely winter
Little darling, it feels like years since it's been here
Here comes the sun, here comes the sun
and I say it's all right

Little darling, the smiles returning to the faces
Little darling, it seems like years since it's been here
Here comes the sun, here comes the sun
and I say it's all right

As a Southern California boy I never thought much about the seasons because they were - give or take a few degrees - not much different from each other.  Now that we live on the East Coast, everyone has their favorite.  Some enjoy the blustering wind and beautiful colors of fall.  Some love the warm and easy going days of summer.  Some even enjoy the cold, white winters.  Not me.  My favorite season is spring with my favorite day the first time you wake up to young birds singing their songs of joy.  For me, this is not only the sign that winter has past, but of new beginnings. 

Tonight we will move our clocks forward one hour in preparation for the coming season.  At the same time, we are moving forward with our preparation to begin Myozyme treatments for the girls.  Within the past month Emma has completed her MRI, cardiology, and pulmonary function tests while Maddie has prepared herself for the next step.  We've also had the chance to visit the Day Medicine wing at CHOP where the girls will receive their treatments every two weeks for the next year.  There, Emma and Maddie will share one room with recliners, a TV with DVD, and plenty of space to do their homework (ugh!).  The wing also has a craft area so all the kids can escape their rooms with IV poles at their sides.  And don't forget music day and Tiara Thursdays!  Mom and the girls are already discussing movie options and deciding what one wears to Day Medicine.  These things must be planned after all.

Since November we've been thinking about, talking about, and I must admit worrying about the treatments.  What will they be like?  How will the girls react?  How effective will they be?  Etc, etc...  Within two weeks we will begin to have our answers. 

While winter is passing and spring approaches, so does the next step in our family's adventure.  Whatever this new beginning offers I want my little darlings to remember:

Here comes the sun, here comes the sun,
and I say it's all right

All for two and two for all,
Matt

Credit to: The Beatles, "Here Comes The Sun"