Almost a year and a half ago now, we came to a crossroads. We were presented with an opportunity for Abby, our youngest daughter, to be a part of a clinical trial. She was born with a Urea Cycle Disorder and although this was not her first time participating in a trial, it would be the first time the distance to the trial site would require us to FLY in order to participate. Not a big deal for most people, but for us, having a kiddo with a rare disorder, a disorder that makes common illnesses a stressful event, dealing with the anxiety of exposing her to lots of people, being out of our routine and out of our bubble, this decision was a Really. Big. Deal.
This trial was to see if a nitric oxide supplement, in UCD kids, with the specific UCD of arginiosuccinic aciduria (ASA) would help them with memory issues, problem solving skills, and just better mental clarity. ASA kids lack nitric oxide. So, we are talking about a supplement that could help Abby’s BRAIN. Help her to think more clearly. Help her to understand more easily. Knowing it would require FOUR trips to Houston in a year’s time, knowing it would mean LETTING GO of our fears that have kept us so close to our home base of Riley Hospital, knowing it would expose Abby to ALL the germs and yuck that you experience traveling, Scott and I said YES…if this can help her brain, then, YES.
The next conversation we had was, who will go with me. Realistically, Scott couldn’t go with me every time. Not only because he has a full time job, but also because we have two other kiddos that needed one of us home. I did not want to travel alone with just Abby. I am not a frequent traveler, hadn’t flown in years and the thought of navigating an airport, hotels, transportation in a big city with just me and our little girl about sent me into a panic. As we shared with a few different people that we had decided to take the leap, it was incredibly humbling hearing those same people say that they would go. That they would take the time out of their daily lives to make a trip with us, was just so selfless. Ultimately, it was my dad and my dear friend April (and her son, shout out to Chaz) that ended up being our travel buddies until the very last trip. SO GRATEFUL that they spent that time with us. Our last trip, that we just got home from, we took our whole family.
It was surreal having us all there. Showing Scott and the kids all of the sights that Abby and I have been taking in and experiencing each trip. Galveston. Kemah Boardwalk. Johnson Space Center. The Museum of Natural Science. The Houston Zoo. Restaurants that have become our favorite, like Bubba Gump’s and especially the amazing little Italian restaurant in Rice Village called D’amicos. This last trip we DID IT ALL. Thank God for the City Pass. Costs $50 for kids, $60 for adults but gets you in to ALL of those places. Well worth the money, because if you do them all, it saves you a ton. The kids had an absolute blast. Abby LOVED having her brother and sister, and especially her daddy with her and I loved that MY tribe was all together.
So, where does that leave us with this trial? WE ARE DONE!
No more journals to fill out. No more keeping track of if she had a bellyache, or headache, or what she took for either of those things. No more little pink lozenge to take every morning and night on an “empty” stomach. But,
WE KNOW NOTHING…
We knew going in that until all the participants wrapped up their portion of the trial, we would know nothing. They wanted 16 participants. They currently have 8. Abby was # 2 enrolled. We have at least a year before we know ANYTHING. I do believe I saw a difference in the first 6 months of the trial. I believe that is when she was on the actual supplement and not the placebo. But we won’t know that for sure any time soon. Patience is NOT a virtue of mine, but this forces me to practice patience, or I will lose my mind.
Clinical trials are a beast, in a lot of ways. Physically, mentally and emotionally. There is a mindset you HAVE to have to survive a trial, and that is, it’s really not about you. This is greater good, bigger picture stuff. Yes, it may help Abby down the road. By the time she’s eleven years old, I pray that it is protocol for all ASA kids to take a nitric oxide supplement. But that’s the thing…Abby will be ten, probably more like eleven before it ever becomes the standard, assuming the trial proves it is effective. But that means that Harper, our little niece with ASA will be four, or five, or even six…my point is she will have so many more years to benefit BECAUSE OF ABBY. Because of ALL of the participants in this study.
Clinical trial participants ARE heroes. Abby has fearlessly and courageously done EVERY. SINGLE. TEST. that was required of her for this trial. Never. Once. Complaining. She trudged through it all, knowing that her payoff won’t come for quite a while. She leaves me in awe, daily.
This trial forced us out of our box. It shattered our comfort zone. We’ve traveled in taxi’s, on trains, we even Ubered! We have set fire to ALL THE FEARS we have had about traveling away from “home”. And, it has shown us that Abby LOVES adventure. She wants to GO. DO. EXPLORE. If nothing else comes from it than that, I am still so grateful.
As I looked out the window on the plane, watching Houston get smaller and smaller, I couldn’t help but feel emotional. We were heading home for the last time. WE. DID. IT. What once seemed like the biggest obstacle, we conquered. And I was reminded yet again, that you don’t grow simply staying grounded. You grow when you have to STRETCH. When you decide to take the leap. When you Just. Let. Go. When your FAITH becomes greater than your fear…that’s when the magic happens. Thank You, Jesus.
If you want to read the other blog posts I’ve written about this trial, you can click on the following titles…
As always, thanks for reading!