First, let me say it is an honor and a privilege to be able to share the stories of so many amazing kids. Every year, there is a flood of emotions as we look over all of the Hero Signs and think about the awesome kids and families we have met on our childhood cancer journey. It's sad to see how many signs say "in memory of" but it's nice to know that we are able to remember these kids every year at this time and share them with others.
On that subject, this year, we did something new. Every year, we take the Hero Signs from the previous year and stick a new sponsor name on the sign. This year, we realized that 4 children who had "in honor of" on their sign were no longer with us and we needed to change their sign to "in memory of". Normally, the night before, we stick new sponsor names on Hero Signs but it didn't feel right to just slap an "in memory of" on the signs. Those kids deserved a little more. During the pre race announcements, we honored the memory of the 4 kids we have lost since we started doing the Hustle for Hope. On Friday night, I had talked with my mom (Nana) and my Aunt Pam about helping with the sign stickers since they knew some of the kids and Joe said he would do some as well. As we were getting ready to start the announcements and I was thinking through how to lead into the signs, I saw Denise Rowe, a dear friend and the mother of Ethan, one of our "in memory of" heroes. I asked her to help me with how to talk about these signs and told her what we were doing and how it didn't seem right to just change the signs and not say anything. She had tears in her eyes and she said, "You have to do it like this. They have to know the reality.". She asked to change one of the signs and the sign my eyes saw first was for Owen Steinmann, a sweet boy who only lived 6 months but who's legacy is changing the world. Last year, Ethan's family and Owen's family came together when at the last minute, Ethan's family could not go to Childhood Cancer Action Days in Washington D.C. and they gave their spot to Owen's family to go and advocate for Tennessee kids. On Saturday morning, Ethan's mom, changed Owen's sign to "in memory of", from a cancer mama who knows exactly what that transition feels like.
Maybe it isn't right to start the event or this post on a downer, talking about kids dying. But guess what? Childhood cancer is the number 1 disease killer of children. It is a downer. And for the 4 other oncology families who were in attendance at the race with their children, I guarantee they have felt all the fears that that statistic holds. They all had tears in their eyes as we honored the memory of the kids who did not survive. It was nice to lock eyes with others who get it as we stood before the crowd. There may have been 200 people standing there for those pre race announcements, but all I saw were my fellow oncology mamas and daddies. Our community can feel so small and lonely sometimes but when we are in a group surrounded by people who want to show love and support, it doesn't feel nearly as small or lonely. As I thought of that fact on Saturday morning, I realized our 5k is a little bit like Lighthouse in that way.
Lighthouse Family Retreat serves families living through childhood cancer by sending them on beach retreats. On retreat, families are loved and supported by a host of volunteers who give of their time, money, and talents to show these families God's love and introduce a hope in Him. We were blown away by LFR when we went on our first retreat and knew we wanted to be a part of this life changing ministry. Last year we were able to donate $7500 from Tillery's Hustle for Hope 5k to Lighthouse and this year, Tillery's Hustle for Hope 5k has raised $10,000! Amazing things will happen on the coast and we are so excited to be able to support it financially as well as through serving on Retreat 18.
Two local families that we know will be going on retreats this summer. The Silenos were in attendance at our event this weekend and will be going on retreat a few weeks before us. Their supporters from #NoahNation came out on Saturday and it was great to see them rally around Noah and his family. The other local family going on retreat this summer is the Crippen family. Wyatt was diagnosed with a brain tumor a few years before Tillery and we reached out to them on the day after Tillery was diagnosed. They have been a support system for us from the start and this year, they will be on the retreat we are serving on and we will be able to give back to them.
As I'm talking about local Lighthouse families, we had another in attendance. Hattie's family came to our 5k last year while Hattie was still in the hospital. This year, they are just coming off of a Spring Break Lighthouse Retreat and Hattie's dad, John won our 5k while pushing Hattie in a stroller. So many people were amazed by his speed, especially while pushing a stroller but we knew that he wasn't pushing just any baby in a stroller. He had a stroller full of inspiration that fueled his run! It was great to talk with Hattie's family about their Lighthouse experience and we can't wait to get together with them soon to swap more Lighthouse stories.
There is so much to say about the community that Tillery's Hustle for Hope has become. There are the usual suspects: our friends and family who have been with us since diagnosis day. They come to everything and always open their hearts and their wallets because they felt it all alongside us. They were at the hospital with us while we waited for surgeries and played with Tillery while we got a shower. They have made us meals, donated their blood, bought our lemonade, and run 5ks all in support of our girl and their support means everything.
Our community also includes the people who have had the honor of meeting Tillery along the way. Many of our close friends here in Knoxville have only known a happy and healthy Tillery. They have heard the stories but can't quite wrap their head around the stories we tell actually being about the little girl they see dancing at the front of the church and learning new things in school. They love Tillery and the joy she brings and have joined our efforts to support childhood cancer organizations as they see what those organizations have done for our family.
Our community includes the virtual runners who are scattered across the country (I sent shirts all the way to Washington this year!). Some of the virtual runners have met Tillery but many have only met her through social media and still are amazed by her and want to be a part of her event.
All of the above people are amazing. We love you all and we appreciate you all. You have poured into our family so much and our hearts are full knowing you are always here for us.
Now let me tell you the cool thing about the 5k...sometimes it's the random people that bring about the coolest stories. See, after the 5k is over, we spend the rest of the weekend swapping stories about people we met and stories we heard. Our family and friends walk around and talk to people at the event and ask about how they heard about us and share a little of our journey.
This year, we met CourtSouth Ron, who randomly sent me an email the night before to ask if we needed volunteers. I didn't respond because I was a bit overloaded on Sat morning so Ron just showed up and asked what he could help with. By the end of the event, Ron was family. He put out Hero Signs, talked to Tillery's family about her story, cheered for runners, and took selfies with Til. When he left us on Saturday morning, Ron went to CourtSouth, the gym where he works and changed the sign to honor our girl and many other kids we talked about that day.
We were pumped to see the Morristown crew. They are a group that our dear friends Daisy and Cameron round up every year and their support is pretty cool. The first year of our 5k, Daisy and Cameron were engaged, last year they were newlyweds, and this year Daisy was running for two. We can't wait for next year when they show up with a stroller!
Tillery had 3 people she really wanted to come to her 5k. While many people get directly invited by Tillery, these 3 people Tillery asked about daily.
"Is Miss Stovall coming to my 5k?" Tillery loves her Kindergarten teacher and was so excited that she came and she even brought her family, too.
"Is Baby Mae coming to my 5k?" Mae is the little sister to Tillery's friend Jax, who we met in Cincinnati. When Jax passed away over 3 years ago Tillery lost a playmate so she is thrilled to be able to play with his new sister Mae. Currently, Mae is really mostly interested in eating her own hand but Tillery said "she eats her fingers so cute!"
"Is Connor coming to my 5k?" Connor is the kicker for the Bearden Bulldogs football team and Tillery was able to be an honorary team captain with him back in the Fall to go out on the field for the coin toss. Connor raises money for Alex's Lemonade Stand by having people pledge donations per point he scores and Tillery and Connor have struck up a great friendship since then. Not only did Connor come to her 5k, but he brought others from the Bearden Bulldogs to support.
We also had some special guests with us from our Ronald McDonald House days.
The Yelverton family did a family donation in memory of their mother/grandmother Mary Yelverton and a big group came out to run in her memory. Her granddaughter Dominick was at Cincinnati Children's and the Ronald McDonald House with us back in 2014. We were all in the PICU together during some pretty scary days for both our families and formed bonds during that time.
Lisa, Whitney and Finnley came all the way from Iowa to participate with us this year. We met in the playroom of the Ron when baby Finn was very curious about Tillery's helmet. Friday night, the girls played together and then started the race on Saturday morning together. Finnley's grandmother, Lisa has participated in all of our past 5ks virtually so it was cool to have her here in person.
The Wolfe's are special RMH friends. We met Haven and Mallory on Tillery's first day at the Ronald McDonald House after she was just discharged from the hospital. Haven was the reigning Miss Pre Teen USA and her platform has always been the RMH so she was there in crown and sash meeting the kids. Haven's shiny crown drew our attention and her kindness won our hearts. She and her mom volunteered often at the RMH while we were there and they would always visit us or leave notes if they missed us. It was so great to have them visiting us in our real home.
There are so many others I should probably mention. Shout out to all the new people who came and joined our community. It's great to see this event growing bigger each year.
I've included photos that I've collected (*stolen) from others. I took exactly 1 photo the entire day. We had a photographer, Christine from Signature Moments who volunteered her time and talent on Saturday and we will share her photos when we have them.
