At the end of April I got a call from our genetic counselor about the results of another genetics test we elected to do with a different lab. The lab, Athena, has the only patented technology to just detect Duchenne. The lab we used the first time, Baylor, used a test that detects all sorts of conditions, Duchenne being one of them. The purpose of the new test was to see if this lab could detect the gene mutation using their technology, since they will be running the genetics screening on #3 when he arrives. Hadn't really worried much about it until I got this call. She asked if I had talked to Sam's dr and started going over some of the basics of the newer results: yes, it detected DMD; confirmed the deleted exons were 48-50.....she said some other stuff but by then I stopped listening. Ummm, what???? In January, we were told Sam has 5-7 deletions (which is rare). You could hear her flipping violently through papers and confirming that the original lab did find he had DMD with deleted exons 5-7, and then she hung up on me. I'm standing in the middle of Target staring at my phone thinking "what the hell just happened?" Long story short, the first lab was wrong. This is a total game changer. Scientists are developing a drug for exon deletions 47-51 as I type this. It's in Phase III clinical trials now and the results from Phase II were very promising. There is a light. He still has DMD, which really really really sucks, but there's hope. I can't remember the last time we received good news and cried tears of joy. It was a good day.
That was the same week of the MDA Muscle Walk in Houston. The only word to describe this event is overwhelming. Sam's Soldiers showed up in the masses. Family and friends from out of town. People who I don't even know. People I just met this year who don't even know Sam. His teacher and school staff! An entire varsity soccer team who got up early on a Saturday, designed their own shirts and raised over $1100 for a little boy only one of them knows...I was so touched. There are really no words. We didn't win the prize for most money raised, but believe me, the $12k we did raise is nothing to sneeze at (we were 2nd place BTW). I'm pretty sure we had the largest team there - 132 people. All for Sam and his fight. I love you all and there's really no way to thank you for being there. Everyone in their Sam's Soldiers shirts is an image I will never forget. At least once a week when I pick up kids from school, I'll see a child or a teacher wearing their Sam's Soldiers shirts and it makes me smile.
Family from Austin came in
This is what was so overwhelming - and it's not everyone. Sam's Soldiers came out in force, there were over 130 of us!!!
The weekend after that was Caroline's First Holy Communion. All of Nick's family came in for this. It was a good weekend. The cousins got to play. Shannon and I got to catch up. Nick got to hang out with his brother. It was fun.
My pretty girl. She looks so grown up here.
This is my absolute favorite picture ever! Sam was so mad no one brought him presents that he pouted in every photo. He's not rotten at all...
My beautiful nieces (missing: Sam and his bad attitude)
There we go! I don't know what Nick told Sam after the above pictures were taken, but his attitude really turned around!
Caroline and her Parrain
Back in March, our friends, Cary and Will, agreed to help host a party that benefits Fall Creek Elementary. We plan it, pick a date and then put it up for bidding at the annual gala. People attending the gala bid on it and show up to the party ready to be entertained. They have tons of these parties to bid on too: tequilla tasting dinner, guys poker night, ladies luau, and my personal favorite, adult field day. We chose a murder mystery party theme. It was SO fun. We served lots of yummy food, made a ton of hurricanes and assigned the 10 couples at the party characters to play when they arrived. Freaking hysterical when you start drinking hurricanes and pretending to be someone else. Being the only sober one in the room was very entertaining for once.
Nick's idea to rename the hurricane. Seemed fitting
The murderer and the secret spy
He wishes...
Uh oh!!!!
Thanks for hosting with us guys!
School is ending VERY soon. Caroline gets out June 7th and Sam gets out May 31st. I've been making calls trying to get these kids into day camps, VBS, swim lessons...you name it, they're in it. Got to keep these kids busy this summer. I told them the other day that the only reason we are leaving the house this summer is to drive them somewhere with A/C or to get my fat ass in the pool.
Coming soon...family vacation post in June. #3 news. Baby shower in July.
Love it!
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