Back on the Rollercoaster

 My daughter’s tumor regrew…

…after 3 ½ years…

…when her lead oncologist just left the hospital…

…and in the middle of a global pandemic.

Sometimes things aren’t ideal. Sometimes life isn’t what you imagined or what you wanted. Sometimes it just sucks.

Today is the day we expect to get results from her latest testing to help guide our next steps. I’m sure I’ll write more later about those next steps but for now, I wanted to write about the right now. We’ve always been really open about this journey and I want to be open about the journey 2.0.

There are a lot of weird emotions and thoughts that come with going back into treatment. See, the first time around, you are terrified because you don’t know what is coming, but the second time you are terrified because you do. The first time, you don’t know how lonely it will feel but the second time you know that you will have a new tribe to fill the void of those who will bow out. The first time, you cling to your faith and the second time, you grip that faith just a little tighter.

They say ignorance is bliss and it’s so true. On October 1, 2014, if you had told me that the next day our baby girl would be in the operating room for a 15-hour brain surgery, I wouldn’t have been able to handle that. If you had told me that when I left my house that day to drive 6 hours North that I wouldn’t come home again for months, I wouldn’t have been able to handle that either. If we had been told on March 13^th that we would miss the rest of the school year and would return to school on the computer in the Fall, none of us would have been able to handle that. So right now, as I have no idea what the upcoming weeks, months, and years of treatment might look like, I know that I can’t handle that knowledge.

When Tillery was first diagnosed in 2014, so many people rallied around us in support. Within a few months, only a few people were still checking in on us. The road of childhood cancer is hard and heavy and unless you have to walk it, it’s really difficult to opt-in to walk it along with someone else. Many of the people who jumped in with us then and have jumped back in with us now are those who have walked it themselves. For many of those close to us, returning to this journey is reminding you of how hard and heavy it was to follow along before and we know that’s why we haven’t heard from you. It’s ok. The hospital is a hard place to be and it’s even harder to choose to be there.  

Even with as hard as it was, I’ve often said that our days in the hospital were the times that I felt closest to Christ.  Those days of desperation with no answers, no understanding, and no way to see the future, I was in a close relationship with Jesus as I pleaded with Him daily. There was NOTHING I could do on my own and I had to give up control and turn it all over to Him. In the years since those days, I’ve gone through periods of falling out of my faith routine. Sometimes I’ve tried to take the reigns and be in control of what’s happening. Sometimes I’ve tried to just find my own answers. Since hearing the news that Tillery’s tumor has grown, I’ve been in a better routine of prayer and reading Scripture. God always finds a way to take what you are in and work it for good and I know He is working for us right now.

I’m not sure what is to come in the next few days and weeks. I’m not even sure about in the next few hours when we expect to hear from Tillery’s medical team. What I do know is that we have known that this time may come and we have done all we could to stay in this world. We have all the resources we didn’t have 6 years ago and we have faith in our chosen medical team and our Savior to guide us through this.

We can’t promise it will always be fun or cute but you know it will always be honest and true. We will share our hearts and our journey and allow you to join us as much as you would like. In many ways, it’s a little easier now. In other ways, it’s much, much harder. Again, I’m grieving the kids we lost during our first round, as I know those friends won’t be at the hospital with us this time. I’m also grieving all the new parents we will meet at clinic as we remember how widespread this childhood cancer world really is. I’m glad to know of so many great organizations for support but sad that while we’ve poured into these organizations to help others, now we are back at that place again, ourselves.

It’s still a rollercoaster. We never got off it, but the ride got pretty lame for awhile. Here’s hoping that we remember that even when we go on a downward spiral or an uphill climb, there will also be times when we straighten out and catch our breath. We might not get off the ride but we’ve ridden it before and so we can anticipate the unknown. Buckle up, here we go again.

The Problem with Surviving

Here's the problem with your kid surviving cancer... (That's right, I just said that!)

...You start living your life again like normal.

You do the things you did before like grocery shop and put off doing the dishes and get busy with life. You go back to work and get back involved with activities outside of the hospital. You get back in a groove and you slowly start letting pieces of that cancer story leave you.

Then, your child gets a temperature of 100.5 at midnight. Now for you, this means giving a dose of Tylenol and a favorite plush friend and putting them back to bed. For us, the protocol is to call the on-call oncologist and head to the ER. But we have been off of chemo for 7 months and haven't recently had the port accessed so we rolled the dice and did the Tylenol thing. Again, for you, you go back to sleep easily but for us, we lay in bed wondering if we made the right decision or if she will be septic by morning.

Then, the next morning, your child wakes up and is acting great and dancing around the kitchen. You have breakfast and head to work. The kids play and then take an afternoon nap. You get home from work when naptime is over and your oncology baby has a red face and feels warm again. This time it's 3:30 pm and the ER doesn't sound as inconvenient as it did at midnight. Your only plans were to fold some laundry and cook a chicken and all of that can be put off for tonight.

So...Go to ER, Labs, Antibiotics, Tylenol, Fluids, Home. Round trip: 4 hours + peace of mind.

The next morning, same child is back to dancing but you decide to take things easier. Work from home, movies, low stress day. Again, naptime calls and when your oncology baby awakes the fever is back. Oncology says it might be because she just woke up so wait an hour and a half and see if the temp comes down on it's own.

We aren't rookies: Shower, Snack, Pack a bag, Fold that laundry, and go ahead and leave that chicken for tomorrow. Time's up! Thermometer reads 102.0 and oncology says they will let the ER know we are on the way.

Go to ER, Labs, Strep Test, Flu Test, Urine Test, Antibiotics, Tylenol, Fluids, aaannnd Admission! The doctors decided to keep her overnight for observation and then another night just to be safe. (Cultures grow within 48 hours so they decided to have us wait it out there.)

So back to my original statement, here's the problem with your child surviving cancer, you have a life again. Again, you have plans that have to be cancelled. Again, you have things you want to do and things you need to do and you can't do either from a hospital room. Again, you are reminded that your life has forever been changed. Yes, you are so, so glad that your child has survived and you have some normalcy again, but dang if that doesn't make those dips back into it all the more difficult!

Tonight, we were discharged from the hospital. No more fever and no real answer. Probably just a normal kid virus. Our plans were altered for 4 days as we waited on something to develop that never did. So tonight, we came home and celebrated normalcy by finally cooking that chicken.

Here's My Heart

I want to write my heart to you. Right now, my heart is broken and also very full. I need to write it all so hang with me for a bit.

So I turned 37 on Sunday and was flooded with Facebook birthday wishes. What I noticed, though, was that many made mention to my role as Tillery's mom and the journey we have been on. I realize that most of what people know of me these days is that my child has cancer and if you will give me a few minutes, I'll rattle off statistics that will hurt to hear and then I'll ask you to donate. There have been times in my life that having a label on me has made me unhappy and I've wanted to rebel against it, but this one I wear with pride. I'm glad that when you see my face or my name, you remember my child. I'm glad you remember the little faces I've shared over the years. I'm glad I've said it so much that you haven't had a choice but to hear it.

We are on the survivor side now. In many ways, this side is harder. My anxiety and worry is heavier than when we were on treatment. My fears are harder to keep at bay. There is also guilt...oh so much guilt. There's the guilt that my child survived and some of my closest friends' children did not. I've got guilt that my child doesn't have the same side effects from treatment that many other kids around us are experiencing. And the daily mom guilt, ugh! If I don't soak up and enjoy every minute with my child, I'm not doing my job as a survivor's mom. If I don't listen to every crazy story and play every game, I feel like I'm letting down all the parents who don't have their children to do these things.

I want to tell you about 3 experiences I've had during the past 2 days that stirred up emotions that put me on this crazy rollercoaster I'm currently on.

It started with a baptism. The sweetness of a baptism. Two parents bringing their darling baby to the front of a church and making a covenant with God to trust Him with their child. The baby was sleeping in his mama's arms as the pastor and parents put handfuls of water on his head. We've seen this so often in churches and you probably have the mental picture, perhaps even thinking back on baptisms for your own children. These parents are just like you, loving their baby and filled with hopes for his life and walk with God. The child is just like your child, sweet and small and cuddly. When you left the church with your child, you probably went home that night and said a prayer of thanksgiving for the gift God had given you, just like these parents. But these parents had another plea to God. "Save our son."

See, this child has a terminal brain tumor and this family has returned home with hospice care to keep their baby comfortable despite the tumors that have infiltrated his brain and spine. Their faith is strong and they cling to a hope for a miracle, while the medical chance of survival for their child is 0%.

As Joe and I sat in the back of the church with our two children, we did all we could to stifle the tears. Baptisms are a joyous occasion. The focus should be on the covenant with God that this child is His and He will be with the child. But I'll be honest, as I sat in the back pew of that church, I was asking God "why". I don't do that often because I know God isn't causing the evils of this world. I tend to rest my focus on Jesus, who delivered us from this broken world and made a way that we can all enjoy an eternity in glory. I believe that with my whole being and in every trial we face, I remind myself of this. But watching this sweet and innocent baby being presented before God and the congregation, I had to ask God, "Why this family? Why this child? Why now?"

As I listened to the music that was played during the service, God worked.

We sang Big Daddy Weave's "The Lion and The Lamb" that repeats the line: "Who can stop the Lord Almighty?" I began to remind myself that the Lord is still in this fight. He's fighting for and through this child.

As the song ended and the next began, tears started to flow. It was the song I sing so often through the halls of Cincinnati Children's Hospital. The song that my heart sings so often for my child and many others. "Holy Spirit, You are welcome here. Come flood this place and fill the atmosphere. Your glory, God, is what our hearts long for, to be overcome by your presence, Lord."

As I was walking to the front of the church to receive communion, the song "Here's My Heart" by Lauren Daigle began. I walked toward communion with these words, "Here's my heart, Lord. Speak what is true."

God can work a miracle in this child. I don't know if He will but regardless, He is our hope. I've been wearing out the song "Even If" by Mercy Me lately. The chorus says, "I know You're able and I know You can, save through the fire with Your mighty hand, but even if You don't, my hope is You alone." The full lyrics are such a plea to God in a low time and I have felt and said them so often for my child and others. I desperately want us all to be on the other side of our illnesses but even if we aren't, we will all be on the other side of this world soon enough.

Sunday night was emotional. I was sad and hopeful all together. I questioned and I was answered. It's not about our wants, it's about His will. I give Him my heart and ask Him in return that He will speak to me and through me.  I ended the evening hopeful.

Monday morning, I got a prayer request from a friend who's daughter recently had surgery. Recovery was rocky and they were still in the hospital and things were hard. When I mentioned it to Joe, he encouraged me to go. So many friends have dropped everything and come to be by our side and we know what that has meant. To see a friendly face in the hospital on a hard day can give you the strength to push through. Joe and I see it as our ministry to help families with children with medical issues. Part of that ministry is showing up.

So I drove to see my friend and her family in the hospital. Her daughter wasn't in the hospital here, but in her local hospital, the same one we believe caused unnecessary suffering for our daughter. The last time I was in that hospital with my child, we left in an airplane heading to Cincinnati Children's. The experience we had in that hospital caused us to have to move for the safety of our child. And now, I was walking in again, to visit friends who were having a hard time there with their child. Now, my friend's doctor is wonderful and much of the struggles of her child would happen anywhere but it was all magnified for me by being back within those walls. As I navigated the halls, my anger rose. As I remembered all of the hurt I had felt there and all the unnecessary hardships that came as a result of that hospital, my heart broke again for not just my child, but for a region of children who only have this as their option.  I wanted to make calls and set meetings and tell our story but I remembered, I had, and I had been let down by the administration on top of the let down of the medical staff.

My drive is so focused on finding a cure, that I often forget that even if there was a cure or safer drugs, so many children don't even have access to decent medical care. So many local hospitals are underfunded and understaffed that mistakes are made. The problem that children with medical conditions face is an uphill battle that takes strong willed parents to fight the fight and find the right medical team to save their child. It's exhausting to think of all we have been through and then to remember that there are hundreds of thousands of families just like ours fighting for the health and safety of their children, it's heartbreaking.

I drove home sad and tired. I wanted to just put on some comfy pants and lay on my couch for the rest of the day. Instead, when I got home, I hugged my husband and children and then headed out again for a dinner with a special group of ladies.

The world of cancer and illnesses is full of secret Facebook communities. Many of my closest friends are strangers or people who live far away. I speak with them in forums and Facebook groups and we share and celebrate and cry and laugh and love together. One of these groups is a group of women cancer fighters. (They allow me an exception because of Tillery.) They are from all over the country but there is a small group of them living right here in Knoxville. Last night, the Knoxville group went to dinner.

I sat at a table with cancer survivors and listened to them just talk of life. They live in the same world we all live in. They dine in the same restaurants and shop in the same shops. But they have differences like numbness in their hands and changes in their tastes from treatments they went through. This group is from a variety of age and social backgrounds but the common bond makes them all the best of friends.

At dinner last night, God sent me a beautiful sign of hope, again through a baby. The woman who sat across from me, a cancer survivor, was holding her 4 week old baby. She spoke of the struggles of pregnancy after chemo but here she was, a survivor, bringing new life into this world.

Friends, life is hard. We all have struggles that get us down. But if you open your eyes wide enough, you can see God's work all around you. If you sit still enough, you can feel His comfort. And if you look away from your pain, you can feel His peace.


Here's my playlist:
The Lion and The Lamb by Big Daddy Weave
Holy Spirit by Francesca Battistelli
Here's My Heart by Lauren Daigle
Even If by Mercy Me

Goals Revisited

Last year on my birthday, I set 4 goals for myself for the upcoming 4 years. - 4 Things in 4 Years til 40 Years

Now, here I am, another year closer to 40. Another year closer to achieving those goals. So I thought I'd check in and do a little progress report.

Goal #1: Make The TIL Foundation a reality.

As I began going down the path of making The TIL Foundation happen, I realized I was going to spend so much time and money making our foundation happen that I would miss time and money going into raising awareness and funding a cure. In the Fall, we instead decided to partner with Alex's Lemonade Stand Foundation and created the TIL Fund. This allowed us to organize events in honor of our daughter without having to jump through all the hoops of creating our own 501(c)3. I'm gonna check this off my to-do list!

Goal #2: Raise $100,000 for pediatric brain tumor research.

In case you haven't heard, we've got some stuff going on! Here's what's in the works:

Norwood Elementary Kindergarten - There are 90 kindergarteners at Norwood Elementary and they are gathering change from all over Knoxville for ALSF. In early April, I went in did presentations to all of the kindergarten classes and sent home coin collection boxes for the kids. We have a large container that we have been filling with bags of change that have been coming home in Luke's backpack. These kids are a giving bunch and I'm so impressed by their excitement to help "Luke's sister".

Go Gray Sunday - This idea has been swirling in my head since 2014, as cards and care packages kept coming in from various churches. Tillery has been on prayer lists across the country and we decided to reach out to many of the churches who have supported us (and others we have met along the way) to have an awareness day. Churches will say a special prayer for families with children with brain tumors, there is an insert for the church bulletins, and many churches are also creating a fundraiser to go along with this day. Go Gray Sunday is May 7th. Here is a recent article written about the day. For more information or to be involved, visit GoGraySunday.com.

Tillery's Hustle for Hope 5k - Our first attempt at a 5k is really coming together. To date, we have 134 registered participants and have raised over $5,000 and we still have almost a month to go! The event is May 20 at Victor Ashe Park in Knoxville but we also have an option to register as a virtual runner for supporters outside of the Knoxville area. For more information, visit HustleforHope5k.com.

We have other ideas that we are working on for September for Childhood Cancer Awareness Month, as well. After we get through May, we will share more on those plans.

To date, we have raised $17,563 for Alex's Lemonade Stand Foundation through the TIL Fund! (including funds already raised thru the 5k) I'd say I'm well on my way to $100,000!

Goal #3: Write a book.

Okay, I'll be honest...I've done nothing on this one. I mean, I have 3 more years. Cut me some slack!

Goal #4: See our family be on the healthy side of this diagnosis.

Dare I say it? Could it possibly be true? According to Tillery's neurosurgery and oncology teams...

WE ARE HERE!

Here on the other side of chemotherapy and surgery and hospital stays.

Here on the other side of pain and hurt and tears.

Here on the other side of delays and setbacks.

We are here, where the rest of you are.

And we are enjoying every minute!

So that's where I am, where we all are.

3 years to go. 40, I'm coming for ya!

*Looking for a birthday gift idea? I'd say a donation to ALSF would be awesome!

No One Fights Alone

It's often said in the childhood cancer world, "No one fights alone.". It's not a solo journey. Lately, I've been reminded of that more and more.

Yesterday, I reached out to friends and family to call their Senators to ask for support of the Childhood Cancer STAR Act. As I watched my Facebook post be shared and copied multiple times over the past 24 hours and read numerous comments and posts from people who made calls, I was humbled. This is an issue that directly affects my family, my child, and our future. But for many who made calls today, they don't have a direct impact on their lives. People called and shared to help ME, to help MY child, and to help MY family. This issue doesn't affect their lives or their families but they have joined our journey and because they are alongside us, they feel affected. When I saw my friends who have healthy families and friends without children who stood with us and made calls today, it brought me to tears. That's what they mean when they say, "No one fights alone.".

We have recently partnered with Alex's Lemonade Stand Foundation and have set up a Hero Fund in Tillery's honor. When we were in Cincinnati, ALSF helped cover some travel expenses for us before we were set up at the Ronald McDonald House. When we looked into them more, we learned they raise a lot of money for research and the TIL Fund is set up with all funds raised being used directly to fund pediatric brain tumor research. It's come pretty naturally to us to discuss ALSF and our hopes for funding important research. A few humbling things have happened over the past week. In addition to our usual supporters (thanks Hendleys and Burkes!) we had two donations this week that really touched my heart. The first came last week from my students, who took up a collection to present to me on the last day of class. (Don't listen to all the negative things you hear about this upcoming generation, these college kids have big hearts!) The second was from our favorite 12 year old, Natalie Vaughn. Natalie is a special girl and a great role model to hang around with our kids. On Sunday, Natalie gave me a handful of bills and asked me to put it towards our Christmas Giving fundraising. We have been doing fundraising efforts for over a year and we have so many people who have been involved. There are people who give every time we ask for donations and people who feel led at certain times or events to make a donation. Regardless of when, why, or how much, since our first fundraiser in August 2015, we have raised almost $14,000 for childhood cancer research! That's what they mean when they say, "No one fights alone."

Tonight, I went to dinner with two friends. I met these ladies when we were each going through some of our hardest days. We met at Cincinnati Children's Hospital. We were all miles from home with sick children and unknown futures. Before going in to meet my friends for dinner, I was texting with a friend who is spending the night tonight at Cincinnati Children's with her child. Earlier today, I spoke with two other mamas I met while living at the Ronald McDonald House. We became a community. Through the hurt that we were going through, we formed unbreakable bonds of friendship. We hugged each other on hard days. We shared meals, Cherry Cokes, and medical supplies. We laughed and cried and told stories that no one else we have ever met could relate to. That's what they mean when they say, "No one fights alone."

If I haven't said it lately, Thank You! Thank you for fighting alongside us. Our lives were forever changed when Tillery was diagnosed. The change was that we learned that we were not alone.


To make a donation to the TIL Fund's Christmas Giving, click here.

I Just Want a Coke!

My dear friend, Christina was diagnosed with lupus nephritis a little over 8 months ago. Her symptoms came on quickly and her body was experiencing kidney failure when she was diagnosed. Immediately, she began chemotherapy and started taking a huge regimen of daily medications to keep her symptoms at bay and to allow her kidneys to heal. This all meant that she was immune compromised and the life she was used to living had to be altered. The plans she had upcoming had to be cancelled. Her daily routine became daunting as fatigue set in. Overall, life changed.

Last week, Christina challenged me to take the Cut it Out 14 day challenge to end lupus. I agreed to give something up for 14 days in support of my friend and will make a donation at the end of the 2 week challenge. Without thinking, I followed the others I saw joining and said I would give up Cokes.

WHAT WAS I THINKING!?!?!

Here is what you need to know about me. Every afternoon, I drink a Coke. I've done this for as long as I can remember. When I was working, it was a little pick me up to get me through the rest of the day. When my kids were babies, I planned my Coke time during naps so I could truly enjoy it. When Tillery was in the hospital, there was no "afternoon Coke". I would drink one in the morning, another in the afternoon, and even have another once she went to bed during my unwinding time (don't judge unless you've lived it!).

I began my challenge last Thursday. I'm literally 4 days in and it's messing up everything!

Thursday's I teach and I normally get a Coke on my way onto campus and sip on it through my 2 classes. Those little bubbles keep me going through back to back lectures on the same material. Sometimes, I skip my pre-class Coke and instead, opt to get one on my way home. A celebratory beverage after surviving 3 hours of college students.

Thursday was different. Instead of my peppy Coke during class, I had water. It was fine but not nearly as fun and the ride home without my extra caffeine boost was no fun either.

Friday, I again missed my pick-me-up and noticed I was getting pretty run down and irritable in the afternoon. I was feeling tired but my usual caffeine boost was no longer an option.

Saturday was a long day with a big church event that took all morning and kept me busy. I came home and the kids went down for naps and I wanted to do my usual routine. I even thought of cheating and having a Coke to reward myself for the busy morning.

It was as soon as I had that thought that I immediately flashed to Christina and how much she must wish she could cheat. She has missed time with her daughter and travelling with her husband because of the fatigue. She has missed participating in group meetings and outings because of germs, and when she was able to participate, she had to wear a silly mask that immediately made her stand out in the crowd. She's had to change so many things in her life and give up so many of the things that bring her little bits of joy. The same kind of joy that my afternoon Coke brings me.

I got sad. I started thinking of all that was running through my head about my Coke and how it all could relate to my friend's struggle.

"Why can't I just have one?"
"It's not fair that I can't but anyone else around me can."
"Would it really hurt to just do it once?"
"I miss my routine."
"I miss my energy boost."
"I'm sad."

I am sad! I hate what Christina misses and how her life has had to change. It brings tears to my eyes to think of this sweet friend, who always does for others, having to make sacrifices in her life. To think of how it must hurt and how that hurt probably comes and goes so she never really feels like she's over it.

For the next 10 days, I will miss my Coke. When Thanksgiving Day arrives, I will leap out of bed and rush to get my favorite bubbly beverage that I miss so much. I will give thanks for Coke! I will also give thanks for my friend, Christina, who is currently in remission. She's done with chemo and done with masks. She's celebrating her life and I'm happy to be a part of it.

Cheers to you, Christina! (Water cheers while I wait for my Coke!)


**To donate to the Cut it Out Challege, Click Here.

Hope in Milestones

A little over 2 years ago, we travelled to visit a friend in North Carolina. On our visit, he introduced us to his new girlfriend. We really liked her and she seemed to be a good match for our friend. Over the days that we spent with her, something was revealed...she had cancer as a child.

This was the first time I can remember meeting someone who had cancer as a child. I remember thinking it seemed odd. After all, you don't hear a lot about kids having cancer and I just imagined them bald and sickly in a hospital bed. I couldn't picture what they might look like if they survived and grew up. Did they survive? Did they ever recover?

I didn't think too much on it and I didn't really ask her much about it. We enjoyed our visit and then came home with hopes that we would see this girl again, as she seemed like a good partner for our friend.

I thought of her again a few months later, on the day that my daughter was diagnosed with cancer. As my mind immediately conjured up those images of bald, sickly children in hospital beds, I remembered our friend's girlfriend. She was an adult, lived on her own, had a job, and appeared very normal. She made it! I started trying to think of her every day. As we sat in the surgery waiting room, I thought of her. As we started chemotherapy, I thought of her. As my child had scars, bald patches, and started to look sick, I thought of her.

I didn't know her well. I only spent a few days with her and I couldn't really remember what we had talked about. Just normal stuff. She was just a normal person. In the scary days at the hospital, I clung to those very normal, almost non-memories I had with this woman. She was the face of survival for me and she was what I hoped my child could grow up to be.

Tomorrow, Joe and I travel again to see these friends. This time, we are going for their wedding. When Joe got the call from our friend to let us know they were getting married, I cried tears of joy for our friend. We love him dearly and I was so happy that he had found his match in life.

Then, I cried a different kind of tears. I thought of all this girl had gone through in her childhood. I thought of how much was stolen from her in life because of her diagnosis. I thought of the things she probably missed out on and the things she never thought she would get to do. I thought about the milestones in life we all experience and was so overcome by thinking of this girl who survived so much to be able to get to this moment to walk down the aisle.

Saturday, I will be joyful, like many, over the union of these two who are so right for each other. But Saturday, I will also be filled with another emotion...hope. Hope for a future filled with milestones and normalcy.

Congrats Chris and Sara! May you experience all of life's milestones together!