Reflections on a Clinical Trial: after 12 months

Posted Monday December 05, 2011 by Melissa

Case having a ball

Twelve months ago, we started on a journey to save our son.

Here is the story.

In November of 2010, Case finally qualified for the intrathecal clinical trial for MPS II by passing a a series of tests – of his heart, his brain, his hearing, his airway, and his spine. Any of these could have posed a problem. Case could have had high pressure in his brain, the most common problem that has prevented participation in the trial. The limit is 30 and it is not uncommon for these boys to have pressure that sits in the mid-20’s and sometimes up in the 40’s and 50’s. Case’s was 12. 12.

I could recount many other events during the course of the trial that are amazing and miraculous. Frankly, you see enough of them and you just begin to shake your head in wonder.

When you see this many miracles, it has an effect on you. How can it not?

I sit here in the hotel, my husband putting Case to sleep, almost as we were a year ago. Many things are the same and so many things have changed. We will do some Christmas shopping as we did a year ago, but now we are buying more age appropriate toys for Case. We will go to the mall and let Case play in the play area, but I don’t have to follow him around to keep him from falling and running other kids over. There are no baby gates in our hotel room. We are playing instead of changing dressings on a new port.

It is difficult not to weep over the blessings we’ve received.

But it also takes it’s toll sometimes, and the hardest to see is the toll on our children. To hear Case say “I wanna go home!” when we’re on the plane ride to North Carolina. To hear our older boys ask who’s staying with them this time. To realize that you will miss their Christmas program and hope that someone will videotape it.

We’ll be glad to finally get infusions in Nashville someday, but I am not one to complain in light of the tradeoff.

Here are some stats from the last 12 months:

  • 84 nights at the Residence Inn
  • 22 lost DVDs
  • 14 Southwest flights
  • 13 visits to the hospital playroom
  • 10 cookouts on the hotel patio
  • 9 trips to UNC with family members (thank you Chris, Mom, Dad, Barb, Rhonda, and brother Chris)
  • 5 trips to UNC with friends (thank you Kris, Sandy, Jennifer and Kristine)
  • 4 replacement toothbrushes and toothpastes when the home ones are forgotten
  • 3 trips to Sugarland for gelato
  • 2 trips to Duke Gardens
  • 2 bottles of Oscar Blandi dry shampoo
  • 1 big miracle

Case drawing - November 20111…big…miracle.

Case has recently gotten into drawing – lots of circles, but any kind of drawing is good. He is working on drawing a smiley face and I think he is getting close! He wanted to share his latest creation, with everyone. The small characters toward the left middle are him spelling C-A-S-E.

I relish every drawing he makes.

Over the past year, I’ve found myself desperately trying to put into words what this year has meant to us, but it is all elusive. I am inadequate for the task. I will let Case speak for me.

We prepared this video at the request of a sweet friend to play at his Christmas party in order to support Case, raise awareness, and describe some of Case’s progress. Enjoy.

 

You may also like:

3 Responses to “Reflections on a Clinical Trial: after 12 months”

  1. sarah mitchell // December 5, 2011 at 9:55 pm

    HUMBLED by everything! case’s new skills, his drawing, his puzzle, his courageous spirit, your determination and your FAITH! thinking of you guys every day!

    sarah

  2. Danielle O'Connor // December 6, 2011 at 7:52 am

    ABSOLUTELY AMAZING AND A DREAM COME TRUE FOR ALL MPS PARENTS!

  3. so touching ,exciting and truely yes a miracle -many hugs Laura and Will xx