Trotting and Taking Back Life

My cousin, Sheyvon, is planning the 2nd Annual Trot for Tillery 5k. Last year's event was a big success as a group of people came together and gave their time, money, and physical energy to support Tillery and our family. It was also bittersweet because Luke rode his tricycle 3.1 miles while Joe pulled Tillery's wagon, but instead of having Tillery in the wagon as the plan had been, he had her Beads of Courage. Tillery and I were in Cincinnati during her Trot. She was discharged from the hospital that day after almost 2 full months inpatient. She was weak and we were drained. It was really hard to miss the run we had looked forward to and miss seeing everyone.

This year will be different. Not only will we be there (extra prayers for health as we get closer would be appreciated), Tillery is walking and will be on the course with everyone. She may not do the full 5k and she may not be very fast but I'm guessing she will be the fan favorite.

To promote the run, Sheyvon made the Flipagram below with images of Tillery's journey. The song playing is Fight Song by Rachel Platten and the line that stands out to me as I watch this is "Take back my life song". As I watch the slideshow of pictures with Tillery's head bandaged or her hair at various lengths and see the lines and tubes that held her back for so long, I keep thinking of how she has taken her life back. She is not that kid that lived at the Ronald McDonald House or in a hospital bed. She's not the girl before the diagnosis who cried so often. She's happy and mobile and full of energy!

As I watched her chasing Luke through our new home yesterday, I started thinking about her upcoming surgery. I wasn't focusing on the scary things but about the after. I was envisioning them right back to chasing each other in just a few weeks. Her hairstyle will change but she will be the same Til we have now. She took back her life from that tumor and it's not gonna hold her back again.

Enjoy the video of our journey. Below are the details of the Trot for Tillery, as well.

https://flipagram.com/f/rdvp2AtaW5

2nd Annual Trot for Tillery

October 8

8 a.m.

Sylacauga, AL

Online registration opens July 1st - https://runsignup.com/Race/AL/Sylacauga/TrotforTillery

Change

Change.

It happens to us all and usually we are reluctant. Even when things aren't going great, the fear of the unknown keeps us stagnant. But we aren't made to stand still. We aren't meant to stay where things are comfortable. We are called to "go" and "do". Oftentimes, those words mean change.

This past week, we moved out of our house. We had fabulous friends who came and helped load our moving van with all of our Earthly possessions. We said our farewells and we drove the truck, not to our new home, but to a temporary resting place. Our new parsonage is not ready for us so we are spending a week catching up with family before we settle in Knoxville.

Monday, we will unload the moving van and begin setting up our new home and life in Knoxville, TN. Joe has been called to serve a new church - Norwood United Methodist Church. This means our family will be meeting the next group of people we will do ministry with. These church members will be at our side during Tillery's next surgery and the next phase of treatment afterwards. They will meet us at a time when we are at our best but in less than 3 weeks of meeting, we will be back in a pediatric ICU room with our daughter.

Tillery's surgery is our next item of change. Right as we set up our new home, we will again be whisked away to Cincinnati. While the planned surgery is fairly low risk (as neurosurgery goes), we have seen that things don't always go as expected and things can quickly change. We have been soaking up a lot of extra family time lately as we prepare for the unknown that will follow surgery. We are excited for a new, rounded head for Tillery and we pray that she will be back to her baseline quickly. We need all to go well so we can be back home soon for the next big change coming at us...
Kindergarten!

Tillery's big brother Luke is starting Kindergarten 3.5 weeks after her next surgery. He's very excited about it and we are very excited for him. He really seems to enjoy school and he loves the independence that comes with having his own thing going on. We know that with school will come new learnings and new frustrations but we are ready for this next step into the world of parenting "big kids".

And speaking of big kids, Tillery's getting to be a big girl herself! She's moving very quickly on those little legs of hers and she's gotten pretty steady, as well. Since her chemotherapy doesn't have harsh side effects and her immune system has held at normal for a very long time, we are planning to enroll Tillery into a school program once she is cleared by her neurosurgery team following July's surgery. She will still need some medical care and physical therapy and we will be working to have a medical IEP worked up to ensure she gets all her needs taken care of at school.

The family we have been over the past 6 months is very different than the one from the year before. We are excited to see what we look like in even just a few months down the road. By the time we reach the 2 year anniversary of Tillery's diagnosis, we will be living in a different town, serving a different church, with one child in Kindergarten and the other in some sort of school program. We don't know how Joe's day's will compare to what they have been at his previous church, but there will definitely be differences there. As for me, I may even go back to work.

Change doesn't have to be bad. We are excited to see where these changes take us.

Let the next chapter begin...

Goodbye Daisy

Today, we say goodbye to our church.

Today, we also say thank you.

Thank you for your prayers and support for Tillery. You prayed during surgeries, you petitioned God during emergencies and critical times, and you praised Him every time we saw improvements and progress. You sent many cards and care packages, along with a treasured Prayer Bear that sat in her hospital bed during some very critical hospital stays.

Thank you for your prayers and support for Luke. You helped him get donuts and let him sit on your pew during times when he didn't have a mommy to sit with him. You helped him work puzzles and played hide and seek with a boy who needed to be seen. You prayed for a big brother to never feel alone in this world of having a sick sibling.

Thank you for your prayers and support for Joe. He was your pastor but you were also able to see him as a dad and husband. You saw his human side and you allowed him to be both the leader of your church and the leader of our family. You prayed for him, not just in a general way that people pray for their pastor but in a way that saw his struggles and the struggles of his family. You allowed him to serve God through your church while your church also served him.

Thank you for your prayers and support for me. As a pastor's wife, I've often felt pressure to be someone that does not feel natural. You never asked me to be anyone other than myself. You always accepted me as me. You supported me in many ways during my time away from home. You prayed, sent cards, and sent love. But the biggest thing you did for me is show me that you were being a church to my son and husband. I was in Soddy Daisy 3 months before leaving for 7 months and I got to know many of you through your words in cards and Facebook. When I returned home, it felt like coming back to old friends and I thank you for that comfort.

We are different people than the ones who first visited your church. Every time we visit a new appointment for the first time, we try not to get ahead of ourselves but it's always hard not to get excited about possibilities we see. At Daisy UMC, we saw a church who wanted to be active and wanted to grow together and we were excited to be coming in to be a part of that. We had no idea that your growth would involve the love you shared for our daughter. It is humbling to see the love and support that has been poured out onto our family over these past two years.

It is customary in the clergy family role to say goodbye on the final Sunday and then turn your focus to the next appointment. We are encouraged to not stay involved at the church we are leaving because it makes things hard for the next clergy family coming in to serve. This week at Annual Conference, so many of our clergy friends said to us, "Daisy has been such a wonderful church to you all, I'm sure you will always stay in touch." They all recognize how special our time here has been and how special your church is to our family. There is no way that we could say goodbye and walk away from the church that stood by us during the darkest time of our lives. You will forever be in our hearts and a part of Tillery's story always.

The Anderson family, who will be moving into the parsonage and the pulpit, will be a wonderful fit for Daisy UMC. We have a good relationship with them and feel that you will be in great hands.

And to our new church, Norwood UMC, we are excited to meet you! We are ready to serve God with you and do ministry with you. We are ready for you to be the next church to help us raise our children to love the Lord.

Today ends our time at Daisy UMC. The parsonage will be packed and baton will be passed. When we meet again, it will be a blessing, just as the past two years have been. Goodbye, friends.

Three Years Old

Today, Tillery is three!

I see parents often making posts on their child's birthdays saying things like "time flies..." or "where did the time go?" I know where the time went. She's been LIVING it!

There has been a whole lot of life between this...

And this...

So much life from here...

to here...

Yes, Tillery has spent time in hospitals, doctor's offices, and having some yucky medical stuff happen, but she's also had so many really cool things happen.

In three years, she has...
- been to 8 states
- been to the beach
- flown on a plane (medical flight, but it still counts!)
- eaten a lot of cheese quesadillas
- renewed people's faith, strengthened relationships, touched hearts, and made a huge impact on many people's lives

Not bad for three short years!

We have had moments when we didn't know if she would make it. We have been scared and we have petitioned God to spare this girl. We have seen God answer prayers and work miracles and we continue to praise Him for every day we have with her.

We praise Him for her health.
We praise Him for those little floppy feet that travel the pavement at a quick speed these days.
We praise Him for the smile that brightens a room.
We praise Him for the lives she's touched.
We praise Him for her silly sense of humor.
We praise Him for her appetite.
We praise Him for her fearlessness.
We praise Him for every bit of the three years we have had and for every day we have going forward.

Happy 3rd Birthday, Tillery!



Now, some birthday party pictures...

Tillery put her hands in her cake because she got so excited and then when she realized what she had done, she did her famous pout face. One of the few times it's been caught on camera.

Tillery's new helmet is so much cooler than her first helmet. It looks like a cat face and she is ready to ride a tricycle really fast with it on!

Surviving

Today is National Cancer Survivors Day and the foundation for the day describes a "survivor" as "anyone living with a history of cancer – from the moment of diagnosis through the remainder of life." Sounds like our girl!

There are certain words and phrases you usually associate with cancer survivors. People talk about being "cured" or "healed". There is the description of "being on the other side". And, of course, the famous oncology word - "remission".

For Tillery, things aren't so cut and dry. Her tumor is large and takes up space in a way that we really aren't expecting a time that it will all be removed. Because the tumor will always be there, her team has said that the word "remission" is not going to be in her future. Those things are okay, though.

See, here's the focus - She has a future to look forward to! She's doing amazing right now. If you didn't follow her story and know the huge strides she has made and you saw her out in public, you would just look at her the same way you look at any other kid. That is the reason why those who do know her story and her huge strides look at her with tears in their eyes. How wonderful to get the chance to be a normal kid!!

While this day is set aside to celebrate the survivors, it's also a chance to educate on life with and after a cancer diagnosis. You can imagine the medical side. The risks of many treatments involve long term health side effects, some that aren't known until years later. Medically, cancer survivors tend to be at a higher risk for developing secondary cancers and can have drug side effects that include loss of hearing or vision, low immunity, infertility, mobility issues, changes in behavior or mood, and many others.

There are other things that cancer survivors deal with as well. Financial burdens and insurance nightmares become a big part of life. Fighting battles to have claims paid and to have continued coverage, being denied life insurance because of pre-existing conditions, ridiculous loopholes that exist in insurance documents that cause people to have certain things be denied even though they are necessary. I have friends who have insurance that denied paying services from out of state providers when a medical emergency happened out of town. I hear stories of insurances that don't cover certain necessary medicines. Many families have to file bankruptcy because the overwhelming amount of medical bills that await on the other side of treatment is more than they can ever handle.  How unfair to have to endure the physical and emotional toll that cancer takes on your body and then have the cost of survival rob your financial future!

A cancer diagnosis often causes relationship troubles. People really rally around families in the beginning but soon, their own lives get busy and they move on. For some people, their feelings are  hurt and it draws a wedge in those relationships. Once treatment is over, it can be hard to return to those relationships where they felt abandoned. For some people, they understand that others have their own lives and are okay with it...on the outside. It can still make for lonely times and sometimes there is underlying hurt that remains after treatment. For couples, the balance in the relationship can be thrown off during treatment and sometimes things aren't able to go back to the way they were before. Often people think of how people become closer during trials but there are many who are torn apart by those same things. Relationships are hard, y'all!

For Tillery, life with cancer is all she will know. It won't be all she is or what defines her, but it will be a part of her. She will have medical challenges that her peers may not experience. At times, she may look different, need assistance, or have setbacks. We expect that her future will be one where she blends in and can do all that anyone else can do like go to school, have a job, and have a family. We will meet each challenge head on and continue to do what we have been doing ever since diagnosis - surviving.

Shout out to some other survivors in our world:
Natalie Justice, Vicki Malone, Cathy Paul - See you all this week!
Grandma Nancy Stephenson - She missed our wedding because of cancer but I wore her veil to have a piece of her with us.
Chase Busby - Keep kicking cancer's tushie! (And tell Ansley to do the same!)
Sara Woolard - Thanks for being an adult we know with a childhood cancer battle. You give us hope daily.
High School Friends - Jamie and Jenny - Keep fighting, friends! You are both an inspiration!
Brain Tumor Friends - Wyatt, AJ, Peyton, Peyton, Zach - Gray Every Day!
Lighthouse Friends - Caralyn, Ollie, Conner, Iyana, Ben, Jayna, Tara, Macie - We can always "come on down to the Lighhouse".
RMH Kiddos - Timothy, Brett, and Mattisyn - Seems like we should have more survivors in our group! Let's keep fighting for our friends.

To all survivors, Congrats! You've made it to today! Let's keep going!