Saturday, September 10, 2011

EPI-743 Day 3 at Stanford

Well this post is a day late. Our super secret free Wi-Fi password stopped working on Friday and we are too cheap to purchase the real deal. Plus, we had to pack and get ready to leave Saturday morning.

So, Friday... we reported to Stanford at 9 a.m. with the following schedule:
-Blood draw 1: pre drug
-Administer drug!!!!
-Blood draw 2: 1 hour post-drug
-ECG on the heart: 2 hours post-drug
-Blood draw 3: 3 hours post-drug

Needless to say, we got to know the lab guy pretty well. The first time Will wasn't sure what was going on so he trotted on in no problem, realized what was happening and started yelling. The second time he trotted to the doorway, stopped and started yelling. The third time, the lab guy came out to the waiting room, offered Will his hand and the two of them trotted down to the chair with no yelling. It was like Will's new best friend.

We left with a cooler full of drugs and Will's t-shirt covered in stickers.

I can't tell you how much we have been anticipating this moment. We know the drug isn't a cure. But it gives us hope in what feels like a hopeless situation. There is no cure, not even a viable one that people are talking about. There's positive words and optimistic outlooks, and that helps.

We drove home from the hospital and I actually had a very heavy heart - for all those families who don't even get the opportunity to participate in a drug study. For all those families who have terrible terrible situations, mito disorders etc. At least with Will's specific problem, Leigh's Disease / Complex 5, there is a start - hope.

We ended our trip with a visit to San Jose for dinner at Maggiano's. Yes, I know we can eat that in Houston, but I'll say, food wise, this trip was kind of a bust. The Stinking Rose was good and so was Carl's Jr. Everything else was just kind of ok. So, we went with something we knew. It was in this awesome mixed use area king of like the Houston City Center or The Woodlands Town Square. They had a small grassy area and a lady on stage singing with a guitar - she sang likely the longest version of Stand By Me we have ever heard.

Will loved it! There was a fountain which his splashed around in with his hands, found the Greek food truck parked nearby (shocker, he found food!). It was a great end to the whole trip.

We were getting ready for bed and we told Will, tomorrow we're going to get on the airplane again and go home. He said, "nooooo ho-tel" - he clearly was loving life at the hotel. What's not to love? Housekeeping comes daily and I didn't wash a single dish.

We started the day at the train set in the hospital

Five stickers, four juice boxes, three blood pokes, two elbow bandages, one dose of EPI-743 and sunglasses on... you guessed it... upside down.

After dinner, with mom trying to give Will kisses :-)

Splashing in the fountain

Checking things out on stage

1 comment:

  1. Sounds like an awesome trip for an awesome little boy. Glad to hear you and the fam had a great time and got some drugs while you were at it. Can't wait to see wiggles, Carson will probably knock him down with a giant hug (and maybe a kiss but just on the cheek) at school on Monday.
    Love, Aunt JULIE