God Has Opened a Door

When Tillery was first diagnosed with a brain tumor, the hospital "accidentally" discharged us to go home and by them doing that, it gave us the opportunity to seek a better hospital to care for our child. We have often looked back at that "accident" and have seen it as God's hand guiding us from the very beginning. If you will sit tight with me for a bit, I'd love to share how God has been with us since the beginning of this new growth time. 

On July 27th, an MRI, which was to be Tillery's last biannual scan, showed new tumor growth and Tillery's team recommended sending a sample of her tumor for Foundation One genome testing, which we did. It took 3 weeks to get back and they emailed us the report on a Friday with plans to discuss and call us on Monday with recommendations. Over that weekend, I poured over the report, researching big medical terms and trying to make sense of it on my own. One finding that stood out was a gene mutation called an ALK fusion. In my research, I learned that it's typically seen in lung cancer tumors and most research is with adults. I also discovered one researcher out there that is researching how ALK impacts kids with brain tumors and that researcher is Dr. Giles Robinson at St. Jude. His name was everywhere concerning research and data regarding this mutation in kids and a treatment called an ALK inhibitor, which focused on the mutation. 

That Monday, August 17, when our team from Cincinnati Children's called to talk about a few treatment options, I asked if the ALK inhibitor trial at St. Jude was still open. They had not thought of trying that, although they knew the drug was on trial, so they reached out to St. Jude to see if Tillery qualified. 

The next morning, I read a devotion about praying specific prayers and sent a text to a group of my closest prayer warrior friends that read: "I'm asking you to join me in this prayer that I am convicted of...Pray that Tillery will be accepted into the trial at St. Jude and be cared for by Dr. Giles Robinson." 

A few hours later, I got a call to let us know that the trial at St. Jude was closed. 

We continued down the path of discussing TPCV, a four drug cocktail that was up next for treating Tillery's tumor, but it just didn't feel right.  Joe and I decided to reach out to Dana Farber (DF), the top pediatric cancer hospital for low grade glimoa brain tumors in the nation, located in Boston. Our thinking was that it would not hurt to go to the best in the nation for a second opinion. We told Cincinnati we were reaching out to Dana Farber and they recommended also sending Tillery's full case file to St. Jude as well, in case they had a different trial for her. The caveat was that her pathology could only be sent to one place at a time for review. The recommendation was to send to St. Jude since they had just recently seen Tillery's case. 

Dana Farber, with limited information, came back after a week with a recommendation that an ALK inhibitor would be the best option but that they had no option like that for us. They also said that since growth was so slow, we could afford to wait awhile, to see if something else was out there or if the tumor might just not grow anymore. If we decided to start treatment, they agreed with the TPCV option, since there isn't an available targeted therapy. 

After hearing from DF, all eyes were on St. Jude to see if they may have something for us. After waiting some more time, we learned some frustrating news...a mistake had happened and the pathology had never been sent from Cincinnati to St. Jude! We were waiting for an answer and they did not even have the material they needed to review Tillery's case. We were disappointed and angry and scared, not knowing what this lost time might mean for our child. There were many calls and emails that week and finally everything was straightened out and the pathology slides were received in Memphis. Through this, Cincinnati told St. Jude they could communicate directly with us, instead of having Cincinnati as a middle man to communicate the findings. Again, I started to pray that it would be Dr. Robinson who would see Tillery's case. 

Last Wednesday, October 14, the brain tumor board at St. Jude reviewed Tillery's case and afterward, we got an email that they had something to discuss with us and they would call on Thursday. Thursday morning, Joe and I were in separate places when I got the call from Dr. Larkin, an associate who works with Dr. Robinson. As she explained the treatment option, a few things stood out that didn't sound good. She talked about timing being uncertain and there was a possibility of being on the treatment forever. She also said we would need to relocate to Memphis. Paired with the idea of unknown long term side effects, those things didn't sit well with us. We quickly emailed back to St. Jude Thursday afternoon and said we would not be going there for a consultation. We informed them we would instead opt to begin TPCV. We emailed our teams in Cincinnati and here in Knoxville with our decision, and the Knoxville team sprang into action. They quickly scheduled us appointments for the morning of Tuesday, Oct 20, and ordered the oral chemo to be sent to our house for arrival Wednesday. 

We decided to make peace with TPCV. 

Last night, October 19, Dr. Larkin from St. Jude called to follow up. I told her we didn't think it sounded like their option was the right one for our family at this time and that we would proceed with TPCV. Maybe if TPCV didn't work, we could reach back out to them. But for now...thanks, but no thanks. Dr. Larkin asked if Joe and I were available to talk with Dr. Robinson for a few minutes because he really wanted to talk with us about his research. We decided to give him a minute and put the phone on speaker between us.

There was the familiar, and then, there was the unimaginable. 

Dr. Robinson said a few of the scary things we have heard often...Tillery's pathology looks like no other tumor they have ever seen and it's also rather large. He said by looking at her pathology he would think it would be much more aggressive and faster growing so it was interesting that it had actually stopped growing for such a long time and that the current rate of growth is so slow. He explained that her tumor has a mutation that is 2 genes fused together and one (the ALK) is what activates the tumor growth. On a pathology slide, Tillery's tumor is filled with ALK mutations. Dr. Robinson told us about his research with an ALK inhibitor with high grade gliomas. He said he sees them drastically shrink the tumors, sometimes even to the point that they can be surgically removed. He said he's never tried this treatment in a kid with a low grade glioma because of unknown factors, but he said with Tillery's extremely rare pathology, he thinks she would be a good case to study. He would like us to come to Memphis for the first month so that he can closely monitor her. To see how she responds and how her tumor reacts. He than said that what he learns could then be applied to other low grade glioma kids! This treatment is an oral pill that she would take daily, so no yucky taste and no pokes or port. The only side effect he has seen with kids with brain tumors is some weight gain, which they would monitor. We would do scans every 2 months to see if it's working. If there's no change in 4-6 months, we would come off of it. If there is change, he thinks it could be significant, though he couldn't tell us exactly how long she would need to take it...6 months to possibly up to 2 years. His goal is that this could shrink her tumor to a small enough size that we could talk with her surgeon about removing the mass. Dr. Robinson is the first person to ever say to us that there is a possibility that our daughter might not always be a cancer patient!

I started praying over Dr. Robinson's research on September 2nd and on October 19th, he called and asked us to let him try a treatment on Tillery that could potentially not only save her, but could also save so many kids after her! It felt like an eternity to get here and there were many bumps along the way. And finally, last night, we saw God open a door for us and we have decided to walk through it. 

This upcoming Monday, Oct 26, Tillery and I will move into housing on the St. Jude campus where we will stay for a month. Next week will be filled with meetings and appointments and will probably feel pretty overwhelming but on Thursday, we will meet Dr. Robinson and begin a journey with him that we are anxious, excited, and hopeful for. 

Thank you for your continued prayers. Keep them coming. Big things are happening over here!

Back in Cincinnati - MRI time again

It's been awhile since a trip to Cincinnati felt so heavy. 

Last week, we posted our crazy previous 2 weeks and our plan moving forward. Then, over this past week, we continued to search for peace in that decision. Ultimately, we decided we needed to have more review of Tillery's chart. We are having her records sent for review by St. Jude and Dana Farber. Today's MRI will tell us if there has been growth over the past 7 weeks and how much growth. This will let us know if we can wait for those reviews before we start treatment or if we need to start chemo this week. We should receive the radiology report tomorrow. 

Last night, Tillery and I laid down in bed and she said "Mom, sometimes I say a prayer by myself in my bed." She wanted to say a prayer for us and asked "Do you have any prayer requests, Mom?"

Mom: Let's pray for your MRI tomorrow. 

Tillery: Yeah, but why do I have to have an MRI?

Mom: Remember how we saw that your brain tumor has grown a little bit? We are having a new MRI to measure again so we can pick the best medicine for you. 

Tillery: Will it be yucky medicine?

Mom: I don't really know. It might be a pill that you swallow or medicine that you drink. Or it might be a medicine we have to go to the hospital to take. 

Tillery: I hope it's not yucky. I love you, Mom. 

Mom (through tears): Mommy and Daddy love you so much Tillery and we will do all that we can to always do the very best for you. 

Tillery: I know but why do you say it sad. 

Mom: I'm sad that you have to take any medicine at all. I just want you to always be good. 

Tillery: It's okay, Mom. If you feel sad or scared you can always come to me and I will give you a hug. 

Mom: And if you feel sad or scared you can come to me and I'll give you a hug. 

Tillery: Deal!

This kid is amazing!

 

Treatment Options, Plans, and Prayer Request

It's been a few years since we've needed to write anything on Tillery's blog about her own medical care. Not gonna lie...I'd be okay to never have to do it again. But here we are...

Here's a timeline of the past 6 weeks: 

(This is gonna be long so if you'd like, skip to the end for the plan.)

Monday, July 27 - Tillery had an MRI at Cincinnati Children's that showed new growth. For Tillery growth happened in 2 ways. She has actual growth of the tumor size around the perimeter but also, in 2017 her tumor was hollowed out in the OR and that space has also filled in. This means that Tillery no longer has safe space for growth and additional growth would put pressure on areas in her brain that would cause damage that could potentially be irreversible. 

Wednesday, July 29 - The brain tumor board at Cincinnati Children's Hospital met and Tillery's case was presented. Her neurosurgeon and neuro-oncologist, along with their peers, determined the best next step would be to send a sample of Tillery's tumor that was removed in 2017 to have Foundation One genome testing to determine if there are any mutations that could be specifically targeted with treatment. 

Friday, August 21 - The Foundation One testing came back with results. The team was specifically interested to see if there was a BRAF mutation, which would open Tillery up to a new, targeted chemo option that is well tolerated and has good success rates. Tillery did not have that mutation. Instead, Tillery's tumor has a less common mutation called an ALK fusion. We have since learned that they cannot determine at this time how rare this is because they have not included it as a part of the testing for long enough to have a large sample. 

Over that weekend, I reached out in some brain tumor parent groups to learn more about the mutation. I was able to connect with 2 other moms and we messaged throughout the weekend sharing research on the mutation and common chemo options. Both of their children are on treatment for the first time and are on standard protocol treatment like Tillery did the first time. They knew of one other child with the mutation who has passed away and shared her page so I could read through posts about her treatment journey. The cancer parent community is the greatest resource to give real faces and stories to the hypotheticals we hear from the medical team. 

Monday, August 24 - We had a call with Dr. Pillay-Smiley, our new oncologist at Cincinnati Children's. She had shared the report with Dr. Fouladi, our original oncologist who is now at Nationwide Children's and also Dr. Spiller here at East Tennessee Children's. The 3 of them were discussing options and she could not yet give a recommendation but talked through a variety of things they were discussing that included the same treatment we have done in the past, other standard of care drugs, inhibitors for the mutation, and trial medications. We took notes, asked questions, and ended the call with a plan for the oncology team to continue revisiting Tillery's medical history and all options and to come back with a recommendation soon. 

Here I must say is when things became real and really hard for me. We still had no news to share with people: no direction, no plan, no answers. But what we had was a whole lot of possibilities and the fact that we were at a place of such confusion that there wasn't a direct treatment plan was unsettling. Sadly, this is often the reality for kids with cancer. There isn't enough strong research to point down a definite path so it becomes a bit of a guessing game. How often do you go to a doctor when you don't feel well and they say "well there are a lot of medications we can try and none of them is especially great and we don't have enough information to even make a good recommendation, give us some time to read all the research and your detailed symptoms and see if there is something that might be a fit"? It's uncomfortable to have no clear plan. 

We waited an entire week and the following Monday, left messages and emails and still never heard anything. 

Tuesday, September 1 - How appropriate that on the first day of Childhood Cancer Awareness Month, we spent the afternoon on the phone discussing treatment plans? Elizabeth, our nurse practitioner who is the only member of our original oncology team that remains in Cincinnati, called to discuss the options. At this point, they had been narrowed to 2. One drug is newer and targets the ALK fusion, the other is older with harder side effects but known results. After a long discussion and Q&A, we decided that next steps were to try for the targeted inhibitor and see if Tillery could be accepted into a drug trial at St. Jude. 

I should also mention here that while we ended the call with a plan, the plan was shaky at best and relied on a lot of things to fall into place. We spent the evening discussing backup plans based on our call with Elizabeth and this included the possibility of moving our care to Nationwide Children's to follow Dr. Fouladi and searching for other hospitals that might be trying this same inhibitor drug. See, the problem with the targeted therapy is that it's been used in adults and is just now being tried in kids which means they don't know the dosage so it's a guess. You could under medicate and end up not seeing results or over medicate and cause more harm than good. None of the medical team members have ever used this drug and none is overly comfortable. 

Wednesday, September 2 - Elizabeth called that afternoon to let us know that Tillery had not been accepted into the trial at St. Jude. Trials look for specific types of patients and Tillery's case does not qualify her. The team was now recommending the other drug that isn't targeted to her mutation but instead has a long track record in the low grade glioma world. We discussed specifics of that medication, which included that Tillery would need to be more isolated from germs as her ability to fight sickness will be affected. We ended that call with a plan for Cincinnati to reach out to our hospital in Knoxville to see if they are comfortable to manage the treatment so that we can stay close to home. 

This evening was especially hard. The conversations we had about side effects were hard to process. This chemo includes a 5% chance of causing leukemia, which is a low percentage until it's your child who already has cancer and you are thinking of another cancer being added into the mix. We were also processing what it would look like to have lowered immunity in the days of COVID19. Even with a vaccine to help others gain herd immunity, it's doubtful that Tillery will be able to receive the vaccine while on chemotherapy. Our light at the end of the quarantine tunnel was going dim.  We were also thinking about the physical impact on Tillery to have to deal with vomiting, fatigue, lowered immunity, and blood transfusions. We were thinking about the mental impact on Tillery to again have to be held down for port access. How will our joy-filled Tillery handle feeling crummy for the next year? Please don't let it steal her joy!

Thursday, September 3 - We took a day off of medical decisions and discussions with the team. They worked behind the scenes and we worked on processing and finding peace. 

Friday, September 4 - We spoke with Dr. Spiller, our local oncologist. We decided to throw some loaded questions at her since quite frankly, she's not calling the shots so we felt she would shoot us straight without an agenda. She said she hasn't had a ton of kids on this treatment but the ones she has had have tolerated it well. She's not had as much experience with them being hospitalized or isolated as what Cincinnati described to us. She is completely comfortable with this for Tillery's next step. We ended that call by deciding to stay the course. The treatment plan has been sent to insurance for approval and we have scheduled for Tillery to have a baseline MRI on 9/14 in Cincinnati. Once both of those are done, Tillery can begin treatment. 

THE PLAN

This is a 4 drug chemo plan. 3 are oral medications that in most cases can be given at home. The 4th is an IV chemo that she has actually received before. The plan is 8 cycles and each cycle is 42 days. The first 4 days are specifically timed oral chemo doses and then on days 14 and 28 she will go to clinic for her IV chemo. We will have her port place on the first cycle's day 14 and then receive chemo that day. 

If you've made it this far, pat yourself on the back. It's been a long and emotional 6 weeks, specifically the past 2 weeks. 

Our current prayer requests are: 

• That we will be at peace as we begin this round of chemotherapy. 
• That God will give us the words to speak when we tell the children the next steps. We have waited until we have a plan so now we will be working on how and what to say to them.
• That God will put a hedge of protection around our girl. We pray that she would have minimal side effects from this treatment now and in the future and that she will not be exposed to anything else that would make this a harder road that it already will be. 
• That God uses this new phase of our journey to continue to minister to others. We already have ideas of ways that He can use this and we cannot wait to see what He has planned!!

Why We Go the Extra Mile

Mom Confession: I don’t like looking at baby pictures of my daughter.


Let me explain.


See, when you look back at your cute, chubby cheeked kiddos, you remember the slobbery kisses and all the sweet firsts (first laugh, first food, first steps). When I look at baby pictures of my daughter, my eyes zero in on the protruding, tumor filled forehead that I did not see coming. I notice that she’s often propped up when she’s sitting or using her arm to counterbalance the lack of strength on her right side. I see with hindsight what I cannot unsee, my child was not well and I did not know.

Five years ago at this time, we had a 14 month old who cried a lot and seemed to need a lot of extra cuddles to calm herself. She wasn’t reaching her physical milestones of pulling up, standing or walking and she was beginning to regress. Sitting and crawling became difficult and seemed to really upset her. What was causing her to seem to be in so much pain?

On the last day of September, 5 years ago, our daughter was diagnosed with a very large and invasive brain tumor. Immediately, all of the struggles, delays, and tears started to make sense and the parent guilt hit hard as we realized our child had been hurting as we were waiting on her to catch up with her peers. The next few weeks were a blurry whirlwind that included relocating half of our family 6 hours from home, 2 brain surgeries, a blood clot in her brain, placement of a PICC line, a fistful of daily meds including twice daily injections, and all of it leaving our family mentally and physically broken. And that was just the beginning.

It seemed like the punches kept coming as Tillery stopped eating by mouth, began chemotherapy, and had a fall that caused a near fatal brain bleed. We lived away from home for 7 months and returned as different people who had to rebuild ourselves as individuals and as a family.

Once we returned home, we were only through the first phase of the treatment plan and we continued on with chemotherapy as other complications arose. We had a chemo that stopped working and she developed a fungal infection in her brain that sent us back to Cincinnati by medical flight.

It was 2 years before we were able to start to create a “new normal” routine for our family. Even then, we began to face the side effects that followed treatment and really started to see the differences in our child vs. her peers.


September is Childhood Cancer Awareness Month.


Every year in September, we relive it all. We remember all that our daughter went through and all our family suffered as a result of the childhood cancer diagnosis. We wonder what the future will be. In September, we are reminded that even when we feel “normal”, we never fully are.


We will never apologize for the onslaught of statistics, sad stories, and pleas for donations that blow up our social media accounts. We will not slow down or ease in our efforts to make the future better for our child and others. Our fight never ends because her fight never ends.


Will you join our fight?


Ways you can get involved:


1. SHARE – We will be sharing our story and stories of others. We will be sharing statistics and information about childhood cancer. Simply passing that information along to your friends and family helps our efforts to reach more people and grow a community of compassionate individuals who are aware of the impact of childhood cancer.


2. DONATE – We have multiple fundraisers going on through the end of September and you can participate or donate to any of them. You can also simply make a donation on our Alex’s Lemonade Stand fundraising page - https://alsf.me/1683934


3. DEDICATE YOUR MILES – Alex’s Lemonade Stand started the Million Miles Challenge a few years ago with a goal to collectively travel a million miles to raise awareness for childhood cancer. You register by following the link below and then set your mileage and fundraising goals for September. Throughout the month, push yourself to go the extra mile, literally, for kids with cancer. As you run, walk, or cycle, take some time to think about the kids who are fighting cancer. Then share with your friends and family about dedicating your miles to those kids and invite them to donate towards your fundraising goal. https://alsf.me/1683934


4. HOLD A LEMONADE STAND – We love lemonade stands because it’s so simple, even the kids can participate. Our kids love serving up icy cold lemonade and helping to share about childhood cancer.


5. CREATE YOUR OWN – The above ideas are easy for everyone but you may have your own. Feel free to use your talents to participate in Childhood Cancer Awareness month with your own unique touch. We would love to hear about it.


The ultimate goal is to end childhood cancer. We won’t stop until we reach that goal.

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.

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!

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!