Gloria in Excelsis Deo: Fashion Funds the Cure: Charlotte 2022

Today Thomas had the privilege of being a Feature Kid in the Fashion Funds the Cure show hosted by the National Pediatric Cancer Foundation. This organization has a special focus of collaborating with about 24 hospitals across the country to fast track research on less toxic, more targeted treatments specifically for children.

While we know it's not safe to give even an adult's cold medication to a child, we live in a world where so little government funding is put toward pediatric cancer that most cancer treatments for children are actually just drugs for adult bodies. The life-saving treatment wrecks havoc on these little, growing people (children are not small adults). The National Pediatric Cancer Foundation wants to improve that.

Thomas was invited just less than two weeks ago to be involved in this fashion show and we sure had fun participating.

There were eleven Feature Kids signed up to participate, but William--whom I met at the fitting on Thursday night, looking happy and dapper--was rushed to the hospital this very morning with holes perforating his stomach due to his chemotherapy treatment. Those are the kind of harsh effects that this Foundation hopes to alleviate.

Feature Kids

Chris was actually at a father-son camping trip this weekend, so I hired a beloved babysitter to be with me today as a helper. He drove the 90 minutes home (leaving John at camp) to join us for the afternoon and then returned to the camping event. That was very loving.

I arrived at the mall early for the rehearsal and so much walking from location to location. Each child was assigned an adult volunteer to stay with him or her backstage at all times, but I still stayed with Thomas for the two hours until the 90-minute show began. This was quite a gamble that he would not have blood sugar surging too high or too low, making him sick. We packed his own food, he took his meds, and he skipped all the delicious treats laid out backstage.

The children were given so many gifts! They were given a large bag full of toys and gifts personally selected for their interests, a huge bag of candy (which Thomas immediately declared to be for his siblings, bless his heart), and later a last gift bag with more toys.

Receiving his gifts

Thomas worked on his art to pass the time backstage . . . of course!

The Show Begins

I'm a homeschooling mom and I don't hand off my children to other adults. I don't do drop-offs anywhere till my kids are about ten years old. I never left Thomas with a nurse babysitting him in the hospital for me to even got get a meal. This was so foreign for me to leave Thomas with his volunteer while I joined the audience. Meanwhile, I was watching his blood sugar on my cell phone (it's called "following" his Dexcom continuous glucose monitor) and I knew he was going high and feeling weak. (He got so weak that he couldn't do all the walking through the mall, so I carried all 43 pounds of him while wearing heels.) Then his glucose dropped low and was one point from being low enough to set off his alarm while on stage. Because the Dexcom is a medical device, it is actually impossible to silence the alarms. I stood there full of nervousness that we would cause a scene. (Horrors, right?)

Credit: Murphy Photography

Feature Walk

For the Feature Walk, Thomas was dressed in an outfit by Polo (and, yes, the children got to keep all their new clothing) and paired with a professional model to walk down the runway.

Thomas walks at the 4:29-mark in the video below. Hearing the harrowing journeys of all these survivors--and some are currently still in primary treatment or even are relapsed--made Chris and me weep openly.

Credit: Murphy Photography

Alumni Walk

Feature Children from years past are now called Alumni Kids and they get their own walk, albeit with less bling! It is inspirational for us parents to see children who have survived many years.

Dream Walk

Then came the Dream Walk: The children answer what they would like to be when they grow up and the Foundation moves heaven and earth to create for them the perfect costume and pair them with a professional in that field.

(You can bet my heart was torn asunder when the Foundation still honored little William, rushed to the hospital today, by having his Role Model, a professional chef, still walk the runway, holding William's empty costume, and they told William's story.)

Thomas's outfit as a professional artist was easy to assemble, but some of the outfits were incredible. One little boy wants to be a race care driver, and the Foundation found for him a real racing suit for a 4 year old and had embroidered on it his sponsor (the Foundation!) and his own name on the belt, exactly like a real adult suit.

Preparing to go onstage with his two professional artists

Credit: Murphy Photography

Thomas walks at the 2:29-mark in the video below.

Special Guests

Two of Thomas's busy doctors (Nephrology and Infectious Diseases, the latter being who takes care of splenectomy patients) took time out of their weekend to come watch! Thomas's surgeon even tried to join us, but got called into a trauma surgery right before the show. A church friend showed up to surprise us! We were so honored, so touched.

Thomas with his nephrologist, one of his biggest advocates

Thomas with his nephrologist and the two artists

How God Speaks

I must share a God moment.

I debated at length whether I should take off Thomas's Dexcom continuous glucose monitor for the whole day of this event so it would not alarm during the show (how embarrassing, right?). One changes a Dexcom out every ten days and it just so happened that the night prior was the time to change it out, so I could easily have removed it and delayed inserting a new one for 24 hours. Very tempting.

But I thought how it is so important and we really do need to try our best to learn to live with it. I thought of how heartwarming it is when I see photos of children and teenagers wearing their Dexcom in plain view when doing athletics, or in a fancy dress at the prom, or doing any of life's activities. Life goes on.

So, Thomas had his Dexcom on his arm, and he was anxious, too, but for a different reason. He's not accustomed to being apart from me, so we talked through what he would do if his glucose spiked and he became violently ill, which is what happens. Thomas also had concerns about being different. As I was about to leave him backstage with his Volunteer, he asked me, "Mama, do any artists wear a Dexcom? Can I be an artist if I have a Dexcom?"

I replied, "Of course! I'm sure that of all the artists in the world, somebody wears a Dexcom!

After the show, the male artist who was paired with Thomas approached me and told me that at one point he had brushed Thomas's arm and felt his Dexcom. "Thomas, do you wear a Dexcom?"

Thomas answered somberly, "Yes." Then, showing his cell phone, which receives all the data from the Dexcom and passes it on to me, he added, "And I know how to call my mom!" (He knows how to call me for help if his glucose is too high or low.)

The artist showed him, "Look! I wear a Dexcom, too! And I have my mom follow my Dexcom as well." That means this grey-haired, Type 1 diabetic has his Dexcom programmed to send the data live time both to his cell phone and his mother's cell phone. It is very common for diabetics to have loved ones who "follow" them for safety.

Then this artist encouraged me about Thomas having worn his Dexcom during the fashion show, even if the alarm had blared (it's so loud). He said basically, Thomas just has to learn to live life. So he's got a Dexcom. Great. Wear it and get on with things.

Mama had anxiety. Thomas had anxiety. In answer to Thomas's innocent question, "Can a person be an artist and wear a Dexcom?" God answered within half an hour: Most definitely YES.

Being Lost and Found

There were specific instructions to all of us parents to wait at the stage after the show, as the children would be taken to the corporate offices for filmed interviews and then escorted back by their volunteers to be returned to us.

So, imagine my surprise when our volunteer approached me and asked if I had Thomas . . . because she did not.

It turns out that she had told him to pause while she grabbed his belongings and he turned and walked the wrong direction, straight into the gigantic mall full of thousands of people.

Given that I have not left my young children in the care of others (ha!), I was flummoxed and I actually never remembered that Thomas has a cell phone on his person (for the Dexcom data), or I would simply have called him! It turned out that Thomas attached himself to a man and was wandering the mall looking for me. Then my little guy remembered that he had a cell phone and he began calling me, but my phone was on mute!

Finally our babysitter (still with us) said, "Hey, doesn't Thomas have a cell phone?" So I called him and got him with the adult headed to meet us.

I was not actually mad at the volunteer, although this did reinforce why I keep eyes on my own kids. If anyone is going to lose my kid in the mall, I'd rather it be me.

Thomas, safely reunited with his family, walked around bragging that, "I got lost for the first time!" like it was some big accomplishment.