Follow Tillery's journey of hope through life with a brain tumor.

Monday, May 20, 2019

Tillery's Hustle for Hope 5k 2019 Recap

It's been hard to gather thoughts on this past weekend's Tillery's Hustle for Hope 5k. I have so much swirling around and need to sit still for a bit and get it down. Join me on my brain dump from the 3rd Annual 5k...it was a good one!



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.

Tuesday, July 31, 2018

Making Lemons Into Lemonade

Ever heard the saying, "God doesn't give you more than you can handle."?

Ever thought that statement isn't very comforting?

Two years ago, I wrote this blog with my thoughts on this saying because it's been said to me so many times and rather than being a comfort, it's just frustrated me.

The reality is, LIFE has given us more that we can handle! It was God who helped us navigate through the things that were too big for us.

In fact, life has given us a lot of lemons:

Tillery was diagnosed with a brain tumor. 🍋Lemon
Tillery had to undergo 16 surgeries and 2 years of chemotherapy. 🍋Lemon
Tillery was delayed in standing, walking, eating, and learning. 🍋Lemon
We have had to travel for treatment. 🍋Lemon
We know that her tumor can grow again. 🍋Lemon

Those lemons are heavy. Sometimes they have buried us and sometimes we thought we couldn't handle any more...right before another was thrown our way.

BUT, we did the best thing we could with life's lemons...We made lemonade!

Tillery was diagnosed with a brain tumor. 🍋Lemon
We now are part of a pediatric brain tumor parent support network and we help guide other parents through the beginning stages of diagnosis and we have formed a community of other families who can understand us. 

Lemonade!


Tillery had to undergo 16 surgeries and 2 years of chemotherapy. 🍋Lemon

We hate all that Tillery has had to endure but through her treatment, we have learned to focus on the things that are really important in life. We have found laughter in the surgical waiting room and PICU and during chemo infusions and it's taught us to laugh through other stressors of life. 

Lemonade!



Tillery was delayed in standing, walking, eating, and learning.🍋Lemon
Often, Tillery can't do things her peers can do. But when I watch her stumble or fall behind, I see her brush it off. She doesn't focus on what she can't do or what other people do better, she just does what she can and is proud of what she is able to do. 



Lemonade!



We have had to travel for treatment.🍋Lemon
Because we had to travel for treatment, we had the opportunity to stay at the Ronald McDonald House. We built a community there with other families facing their own trials and we leaned on each other for support. We learned to be real with people around us, to accept help when we needed it, and to be a help to others when we could. 

Lemonade!



We know that her tumor can grow again. 🍋Lemon
We have already survived treatment once. It's not new territory and we are more knowledgeable and confident now than we were in the beginning. While it would be really hard to go back, we know we fought through it once and we can do it again. 

Lemonade!





We've been thrown a lot of lemons over these past almost 4 years. We've also made a lot of lemonade from what we've been given. Many of you who have followed Tillery's story have watched Tillery make lemonade from lemons. Many people have reached out and thanked us for sharing and told us how Tillery's story has helped them through difficult times in their lives.

So now, we want to invite you to join us in turning lemons into lemonade!!

This September, as we support Alex's Lemonade Stand Foundation, we want to share stories of people turning lemons into lemonade. But not just any people...YOU!! We are inviting you to send us a private message or email (hope@tilleryisloved.com) with your inspiring story of a time when you turned lemons into lemonade. We will be picking stories to share on Tillery is Loved each day in September and hope to compile all the stories into a booklet that we can make available later as an end of year fundraiser/holiday gift idea.

We can't wait to read everyone's stories and be inspired! Get writing and let's turn a lot of lemons into some sweet lemonade!



*If you aren't a confident writer, don't let that stop you! We are more interested in your content than your writing and can help you craft your story, just reach out to us!

Sunday, July 22, 2018

We've Got To Do It All

We are a week out from our amazing trip to the North Carolina coast to serve at the Lighthouse Family Retreat. We were able to physically and emotionally serve families living through a childhood cancer diagnosis. It was humbling and fulfilling and so, so good for our hearts and souls. 

This past week we also topped $50,000 raised for Alex's Lemonade Stand Foundation through our TIL Fund in honor of Tillery. All money raised through this fund is used for pediatric brain tumor research grants to find better and safer treatment options and hopefully, ultimately treatment options for all pediatric brain tumors. 

This week I also started doing some research on candidates running in the upcoming elections. Our representative to the House and one of our Senators are retiring so we have some newbies heading to Washington D.C. and we need them to be on board with the STAR Act momentum and to be on our side of healthcare issues. 

As I was reflecting today over these things, I realize it takes all these things. We need to help fund and volunteer with Lighthouse to show families God's love and to help lead them to healing and hope they can find through Christ. We need research for much, much better because our family being a best case scenario in the pediatric brain tumor world after 16 surgeries, 2 years of chemo, and still a remaining tumor the size of a fist in our daughter's brain, seems lacking. And we need politicians to help on a large scale with regulations across this land to help kids get better access to better treatments and to follow up on them into survivorship.

We've got to do it all!

So, we are in the early stages of plans for next year's Tillery's Hustle for Hope 5k to benefit Lighthouse Family Retreat. We are looking at dates and a few possible "upgrades" for next year. We are inviting our friends, family, and any Tillery fans who are interested in serving with us next summer to reach out and let us know. We are building a team to come to the coast and love on some families and be what Jesus calls us to be, His hands and feet. 

And we have to keep fundraising for research and shouting awareness facts. Right now, private donations are the #1 funder of childhood cancer research, not federal funding or pharmaceutical companies, just people with big hearts who open their wallets to the cause. While we hope that the STAR Act will help get more funding directed to childhood cancer and specifically to pediatric brain tumor research, we also witnessed first hand back in April how slowly these things move. There is a lot of work to be done and we will keep rallying our friends and family to fund research because these kids need better now! All that said, we have set up our Alex's Million Mile Team to again dedicate our miles in September to childhood cancer. Here's the link to join our team or make a donation. We are also looking to do a kickoff event on September 1st to do the first mile together. Details to come on that. 

Finally, regardless of your politics, we can probably all agree that childhood cancer is bad and there is more that can be done to help these kids. The STAR Act passed the House and Senate and was signed by the president this year (YAY!). While that's awesome, we still have the hurdle of funding for the STAR Act. In the grand scheme of federal funding and our national budget, our funding request is very insignificant. The STAR Act is not asking for more research funding but just to add a pediatric voice to the decision making table. It also has plans to give better access to treatment for kids across the country and tracking of survivors to get a better snapshot of survivorship and it's challenges. The funding amount is small but still requires votes in the House and Senate at times when there will be seats changing over and new politicians ready to shake up Washington. Our issue is bipartisan but it still takes work to get it to a vote. So we will be reaching out to candidates and asking them to support this vote if/when they make it to Washington. And once the election is over and these newbies are getting settled into their new plush offices, we will be calling and writing them and reminding them of this issue that is so close to our hearts. And come April, the Phillips family will again hit up Capitol Hill to make sure the STAR Act gets the funding it needs. 

We've got to do it all!

BUT, we've got you to help!

Thanks for your continued support. Sorry we are always asking for stuff. But as you are seeing, curing childhood cancer seems to be a big undertaking. Glad you guys are joining us on this mission!

Friday, June 1, 2018

Birthday Lemonade Stands

June 6, Tillery will turn 5 years old! In the Fall, she will start Kindergarten! When she was diagnosed, we didn't know if those things would ever happen. So we are asking you to celebrate with us by holding a Birthday Lemonade Stand! 

What I mean by a Birthday Lemonade Stand is a blend of lemonade stand and birthday party décor! You can have a party and invite friends to come and donate to ALSF or hold a lemonade stand while wearing birthday party hats. You can hold your stand in your front yard or in front of a business or anywhere you choose. Get creative!! We would love to see pictures and see how you hold your Birthday Lemonade Stand!

Remember, we are celebrating Tillery's birthday and all the birthdays of kids with cancer. And even celebrating the birthdays of the kids we have lost along the way. Through our fundraising, we can find better treatments for kids!

Here's the fundraising link for our Summer Lemonade Stands. https://www.alexslemonade.org/mypage/1458627

Hold your stand anytime between Tillery's big 5th birthday and the start of Kindergarten!!


Monday, May 28, 2018

Childhood Cancer STAR Act Passed!!

Last week, something HUGE happened for Tillery. It wasn't our awesome fundraiser or her successful surgery, I'm talking about something much, much bigger.

THE CHILDHOOD CANCER S.T.A.R. ACT PASSED THE HOUSE OF REPRESENTATIVES!!!

You may remember that our family went to Washington D.C. a little over a month ago to meet with Congress members to talk about the importance of passing the Childhood Cancer S.T.A.R. Act. It had already passed the Senate unanimously and had about 80% of the House of Representatives signed on as co-sponsors of the bill. Voting was really just a formality but it needed to happen! So our job was to talk it up and ask everyone to push the appropriate members to bring the bill to a vote.

Last Tuesday, the House of Representatives finally brought the S.T.A.R. Act to a vote and it again passed unanimously!! Now, we just need President Trump to actually sign it this week and then we move on to the next stage...funding it!

This was a HUGE thing for our child and for so many others. This bill looks after these kids in the present and in the future and with Tillery still having her mass, there is always the chance that her tumor could grow again. If it grows, the STAR Act is going to help get better treatment options out there. And even if it doesn't grow, the STAR Act is going to be looking at the long term health of kids who have been on chemo and will help her as she ages.

We fundraise for childhood cancer research and we will continue our efforts but the S.T.A.R. Act may be able to open up funds that are much larger than anything we can imagine.

As I said above, we do have a few more hurdles:
1. President Trump has 10 days to sign the S.T.A.R. Act to keep things rolling.
2. We need Congress to again get together and agree to fund the S.T.A.R. Act, which is a pretty small cost compared to most other things that are brought before them for funding.

As always, we have a way that YOU can help! Use this link to send a message to President Trump to ask him to sign the S.T.A.R. Act. https://www.whitehouse.gov/contact/

Once President Trump signs and we move onto the next hurdle of how to fund the S.T.A.R. Act, we will let you know ways you can support that, as well.

Remember, this isn't a Republican or Democrat issue...this is a children's health and safety issue!


Saturday, May 26, 2018

So Big and So Small

We've had an intense week and I have a lot I want to share but I'm gonna have to do that over a series of posts so stand by for a few blog posts with updates over the next few days/weeks. Today, I want to talk about something that struck me throughout this hospital stay.

We arrived at Cincinnati Children's Hospital Monday morning at 5:30 a.m. for Tillery's 16th surgery. She walked across the street and up the sidewalk and all the way to the desk by herself. When we got onto the 3rd floor, Tillery went straight to find the TV that shows cartoons and when they called her name, she navigated the back halls to do her height and weight check without instruction. As I watched her, I kept thinking how big she has gotten. I reflected on all the times we have brought her over in a stroller and the days when she needed instruction on where to go and what to do. But she's grown up in this hospital and she isn't the same fragile baby we first came here with. Now, she's a fierce warrior child who has fought her way to survival for 3 and a half years. Now, she's so big!

Then they put her in the hospital gown and put her on the bed. She laid back and they gave her a blanket to cover up with as she watched a movie. The same day surgery room became a revolving door of nurses and doctors coming through with many of the same questions and asking for repeated signatures. They went through lists of risks and emergency plans. We signed consent to treat, consent to give blood, and consent to save her life. As we went further down the rabbit hole of surgery prep, I would look over at Tillery laying on that bed and think, but she's so small!

When we started to roll her down the hall to the operating room, I remembered the 15 previous times we had walked this walk. This isn't our first rodeo and this surgery didn't come with the fears that many of those other surgeries came with. This time was different because we have watched her be a survivor of surgery for 15 previous surgeries. So I start to think, she's so big!

But rolling her down the hall, we passed many doctors, nurses, and other hospital staff and they all make the same face. It's a face that says both "she's so cute" and "bless her heart" and really communicates the thought...She's so small!

After surgery, we were called back to the all too familiar post op recovery area, where Tillery lay on a bed, sleeping. She is much bigger than previous times and fills more of the bed. It's not a baby laying there, but she really looks like a kid. Her bandaged head isn't as scary as it has been other times because it doesn't look as massive as it has in the past. She's bigger and it's all a little more comfortable. But then, I sat back and looked at Joe looking down on his little girl and I see the relief in his eyes. Even though anesthesia and surgery are nothing new, as parents, we hold our breath until we see them again on the other side, no matter how many times we've done it previously because they are still our children and to us, they are still so small.

This paradox of her being both big and small continued to play out throughout our stay. She was so big when the nurse asked if she needed anything and she responded with a detailed answer of her needs. She was so small when she felt strange and cried without knowing the words to communicate what she was feeling. She was so big when she wanted to go for a walk down the hall but so small when she got out there to walk and you saw her tiny self in her tiny pajamas walking down that big hallway. She was so big when she was asking for toys or wanting to watch a favorite movie but so small when she was tired and needed breaks to rest.

Tillery is only 4 years old but can navigate the hospital better than most adults. After a major surgery that caused swelling, fevers, and even seizures, Tillery took nothing stronger than Tylenol for post op pain. When they came in to remove the bandage and they asked if they should do it fast or slow, Tillery requested fast. She's strong and she's brave and she's tougher than most of us would be in her shoes. But she didn't have a choice in the situation she has faced. She probably wouldn't have chosen to face the pain and hardships that she does but rather, has had to adapt to them. She had to learn to be so big, even though she is so small.

Thursday, April 26, 2018

Adventures on Capitol Hill

Settle in friends, this is gonna be a long one...

We spent the past few days in Washington D.C. and posted a few photos and updates on Facebook but wanted to give a more detailed account of our adventures here on the blog (for you and also for us to remember the whirlwind trip we just had!).

To briefly back up, a few weeks ago, a friend we met through the Ronald McDonald House and Cincinnati Children's reached out to us through Facebook. She works for the American Childhood Cancer Organization and does a lot of very cool things to further research and awareness. She is also active with the Alliance for Childhood Cancer and invited us to join them in D.C. for Childhood Cancer Action Days to help lobby for the S.T.A.R. Act. It sounded like a great opportunity for our family to be a part of so we scrambled to make it happen.

After a very long road trip, we arrived in Washington D.C. at about 11:00 p.m. Sunday night. We were staying at a hotel about 2 miles from the hotel that was hosting training and have never used public transportation with kids before. (Mama was a bit nervous about how the morning was going to go!) Luckily, our excitement got us all up and out quickly in the morning and there was a row of taxis in front of the hotel and we were easily able to hop in one and get across town.

Another family we know from Tennessee was also joining us for Action Days, Amanda Dean and Justin Steinmann. We have shared the story of their sweet son Owen with you in the past. He was diagnosed with an A.T.R.T. brain tumor at 3 months old and passed away at only 6 months old. There story is heartbreaking but not uncommon in the childhood cancer world and families like theirs drive us to want to fight even harder. It was such a blessing to have them on this journey with us and it was fun to get to spend the day in training with friends.

We dropped the kids off in a room next to the room for our training. The kids room was staffed with oncology nurses and child life specialists. There were crafts, toys, and all the medical supplies an oncology kid would want to play with! I found Tillery pretending to access ports once and later found her using syringes as water shooters. These people know what the kids like!

I'll give you the Cliffs Notes version of what we learned in our training...

- The S.T.A.R. Act (Survivorship. Treatment. Access. Research.) is the most comprehensive childhood cancer bill ever. You can learn more about it here  or read the bill here .

- Big things this bill will do: Give a voice to childhood cancer patients by mandating a pediatric oncologist sit on the board that decides how government funded research dollars are allocated and create a database for childhood cancer so that across the country, doctors can compare cases they are seeing and work together on treatment plans.

- Big things this bill won't do: Directly give more money to childhood cancer research. I say this because a sort of rally cry in the childhood cancer world is "more than 4" referencing the NCI's allocation of around 4% of their research dollars to childhood cancers. While we would love more money allocated, that is what placing a pediatric oncologist at the table will hopefully accomplish. We learned that there is a group of individuals who represent the different types of cancer that comes together annually and asks Congress for one collective amount of money for research. Congress doesn't break out the allocations but leaves that to the medical professionals to sort out which research is deemed to be the most important. (Let's be honest, politicians should not be making the decisions on which cancers are priority or which research projects have merit.)

- In 2018, there is an increase of federal research funding to the NIH and NCI. We also learned that current plans for 2019 will decrease this amount but nothing is set on that yet so it can still change.

- We learned a little about some of the research that is being done with NCI funds through the Children's Oncology Group.

- We learned about another piece of legislation, the RACE Act, that recently passed and is focused on research to accelerate cures and equity for children.

Together, we were a group of 233 individuals directly impacted by childhood cancer. We came from 35 states and were set to attend 181 meetings on Capitol Hill in a single day. We all had the same message: Pass the S.T.A.R. Act.

The S.T.A.R. Act UNANIMOUSLY passed the Senate about 3 weeks ago and as of Monday, had the support of 85% of the House of Representatives. To the Senators we were meeting with, our message was "Thank you" and "Please fund the S.T.A.R. Act once it passes the House." To our Representatives, our message was, "Please help push the S.T.A.R. Act to a vote."

That was our Monday. It was long and exhausting but we were ready for action!

Along with our friends Amanda and Justin, we also had a few others from Tennessee to make up our Tennessee contingent. We had a researcher from Memphis who is focused on pediatric optic tumors, an area that is greatly underresearched and underfunded. We also had a mother and daughter from Chattanooga. Savannah is a strong, brave 11 year old osteosarcoma survivor who said in meetings, "I'm here so other kids don't have to go through what I went through." Just remembering her little voice saying it brings tears to my eyes!

As a group, our children have been treated at St. Jude, Vanderbilt, Erlanger Children's, and East Tennessee Children's. We represented 4 of 9 voting districts in the state and both Senator's hometowns.

Our first meeting was with Rep. John Duncan's office and it was just our family for this meeting. The Congressman wasn't available for the meeting but is already a co-sponsor of the S.T.A.R. Act and the staff member we met with let us know we have his full support. We spoke with her about the importance of pushing the bill to a vote and gave her a folder with information about the S.T.A.R. Act but more importantly, pages of stories of kids from the 2nd District who are cancer patients, survivors, and those who have passed away.

After our meeting with our district's office, we headed to meet with Senator Bob Corker's office. This meeting included our whole Tennessee group. This time we met with a staff member who handles healthcare related issues for the Senator. We went around the table and each told where we live and then our reason for being there. Savannah's mom told her story, we shared Tillery's story, our researcher shared the struggles of herself and her peers who want to find better treatments for our children but don't have the means to do it, and then Owen's parents wrapped up our meeting by telling the story of their perfect and healthy baby boy who was taken from them. Owen's mom walked around the table to sit beside the staff member and share pictures and stories of Owen. Again, a folder was left with information about the S.T.A.R. Act and with pages of stories of children from across the state. (For those who wonder what the Phillips children did during the meeting, they were given snacks by a nice staffer at the front desk and noisily ate potato chips and gulped water during the meeting until I finally had to take it away to keep them quiet.)

The other members of our Tennessee group met with a few other representatives and then we all met back up for a meeting with Senator Lamar Alexander's office. We were in a small conference room with 2 of the Senator's staff members and so Joe and the children sat off to the side since the table was small and the kids were tired. At one point in the meeting, I heard loud breathing and looked over to see that Tillery had fallen asleep on Joe! (Surely she's not the first person to fall asleep during a long day of meetings on Capitol Hill!)

Again, a long and exhausting but very productive day!

We are now pulling all of our notes and business cards together to send follow up correspondence. We will be following up directly with the people we met with but also encourage you to reach out to your representative's office to ask them to help us get the S.T.A.R. Act to a vote. Here is a map to help you identify your representative and get contact information for them. Let them know you are in their district and that the S.T.A.R. Act is important to you and you would like them to help push it to the floor for a vote. You can call or email them (or both).

Thanks for hanging with me for my super long post. Here are some photos from the trip.


Ready to learn!
Training with the Alliance for Childhood Cancer
There were a few walls plastered with stories of children with cancer. 

The Tennessee group getting to know each other.
Luke said just a few weeks ago that if he ever went to Washington D.C., he would want to see the White House. It's nice to go ahead and check things off the list! 
These helicopters flew right over our heads and then one landed on the lawn of the White House (see the above photo). We think this might have been the French President who was arriving that day. 
The Washington Monument is 555 ft. tall. These kids do not care. 
They really enjoyed sitting on this grassy hill.
Who's excited to go to the Capitol tomorrow? Apparently just Joe. 


Tennessee Takes on D.C.
Meeting #1 at John Duncan's office. (Note: As soon as the meeting started, Tillery pulled her hairbow out.)

Meeting #2 Bob Corker's office. About 50 photos were taken here and this is the best we have to work with!
During a break between meetings, the kids found a sign promising "small kids" in the area and we went on a search. None were found so we decided they were the kids the sign referenced.
Meeting #3 Lamar Alexander's office. 
Lamar Alexander wins for coolest office décor!
This is what being tired of meetings looks like. 
This ridiculous selfie was taken while riding on a crazy tram thing that runs between buildings under the Capitol Building. We needed an escort to get on and had to go through extra security clearance.

This is the goal - Get the S.T.A.R. Act to The House of Representatives!