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!

Birthday Lemonade Stands

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

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

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

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

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

Childhood Cancer STAR Act Passed!!

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

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

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

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

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

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

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

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

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

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

So Big and So Small

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

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

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

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

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

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

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

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

Adventures on Capitol Hill

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Again, a long and exhausting but very productive day!

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

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

Ready to learn!

Training with the Alliance for Childhood Cancer

There were a few walls plastered with stories of children with cancer. 

The Tennessee group getting to know each other.

Luke said just a few weeks ago that if he ever went to Washington D.C., he would want to see the White House. It's nice to go ahead and check things off the list! 

These helicopters flew right over our heads and then one landed on the lawn of the White House (see the above photo). We think this might have been the French President who was arriving that day. 

The Washington Monument is 555 ft. tall. These kids do not care. 

They really enjoyed sitting on this grassy hill.

Who's excited to go to the Capitol tomorrow? Apparently just Joe. 

Tennessee Takes on D.C.

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

Meeting #2 Bob Corker's office. About 50 photos were taken here and this is the best we have to work with!

During a break between meetings, the kids found a sign promising "small kids" in the area and we went on a search. None were found so we decided they were the kids the sign referenced.

Meeting #3 Lamar Alexander's office. 

Lamar Alexander wins for coolest office décor!

This is what being tired of meetings looks like. 

This ridiculous selfie was taken while riding on a crazy tram thing that runs between buildings under the Capitol Building. We needed an escort to get on and had to go through extra security clearance.

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

Exciting Things in Our Future

Today had a few big milestones as we head into a season of milestones. 

First, we registered Tillery for Kindergarten! I really did mean to follow up and write an update after her neuro-psych testing but it seemed like testing results and decisions kept dragging out. Upon discussions with the psychologist from Cincinnati and a crew here in Knox County, we are moving forward with Kindergarten with the thought that if the first year is tough or she lags behind, we will have her repeat it, if needed. According to the testing, Tillery has the cognitive ability to learn but she does have some obstacles that many of her peers won't have so we are working on a 504/IEP plan to have in place when she starts Kindergarten to make sure she has all she needs to be successful.

The second milestone of the day was a bittersweet (temporary) end to gymnastics. Tillery has made huge strides with physical skills and confidence over the past year in gymnastics and we are so proud of her! This wasn't goodbye forever to gymnastics, we are just taking a break because we have a busy season coming up in our lives and we will rarely be able to make it to the gym. 

All that said, let me fill you in on what the Phillips family has coming up over the next few months! We will be continuing to celebrate how far Tillery (and our family) has come and will continue our fighting back against the cancer that tried to knock us down!

Next week, we go back to Cincinnati for our quarterly appointments and scans. If the tumor is stable, we hit a big milestone as we will step back to doing these appointments only 3 times a year. It's scary to add more time between these appointments because the reassurance that all is still well is really good for us mentally. But the extra time between appointments means the team is confident in her healing and in our ability to spot trouble if it were to arise. 

After our trip to Cincinnati, we head to Washington DC, where we will be joining the Alliance for Childhood Cancer for Action Days at the Capitol. We have been talking for years about the STAR Act and asking you to call your local Congress representatives and ask for their support. Now, we are actually going directly to them, face-to-face! We will be sharing our family's story of living through childhood cancer and all 4 of us will have the opportunity to share...even Luke and Tillery! Not only will we be advocating for many of our friends here at home, we will also be taking their stories with us in the form of fliers of children we know across Tennessee (and a few special buddies from other states). We will be their voice as well and will be able to, for the first time, make some strides in the political side of childhood cancer research. We are beyond thrilled to have been invited to do this and cannot wait to share all about it with you when we return!

We will return from our travels and Tillery will finish out Pre-K at a school that has been so great to her. Fort Sanders is a special little school full of love and support and we will miss being a part of that community. It's been the perfect place for Tillery these past 2 years!

As Tillery wraps up school, we also have 2 big fundraisers happening in May. Go Gray Sunday will be May 6. This is the second year we are doing this event and last year we had 17 churches participate by wearing gray, sharing awareness facts of pediatric brain tumors, praying for families and children affected, and even fundraising. We look forward to continuing to grow this event annually. It's been great to share with our pediatric brain tumor community about the love of churches who are supporting them. (For more info, visit GoGraySunday.com.)

Then, May 19th will be the second annual Tillery's Hustle for Hope 5k. Last year, our inaugural event raised $10,000 for Alex's Lemonade Stand Foundation to fund pediatric brain tumor research. This year, Lighthouse Family Retreat will be the recipient of funds raised, as we give back to the organization that planned and funded our beach retreats for the past 2 years. We love what we have witnessed Lighthouse do for our family and other families we were on retreats with. We are excited to support their ministry this year financially and also with our time later this summer. (For more info or to register for the 5k, visit HustleforHope5k.com.)

The week after the 5k, Tillery will have her next surgery. Her left bone flap has been sunken since her tumor debulking surgery last March. The plan for this surgery is to push the piece of bone forward and attach it to the front of her skull to hopefully have it fuse and grow with her. This is a fairly minor surgery in Tillery's world but still involves safely covering her brain and there are always many risks involved with those surgeries. 

As Tillery is healing from surgery, we will make our annual trip to Lake Junaluska for Joe's UMC conference. In year's past, we have collected pop tabs and sold lemonade during conference but I think this year, we will take a year off from that side and just allow it to be a restful week for the kids and me. (Holston Friends, we will still gladly accept bags/boxes of tabs if you have them and if anyone wants to give us donations for our fundraising efforts, we will take those too!)

In July, we are excited to be returning to the sand with Lighthouse Family Retreat. The past 2 years, we were a "Retreat Family", paired with a "Family Partner" who takes all the stress/work out of vacationing. This year, we will be serving as a Family Partner to a Retreat Family, meaning we will be paired with a family who has a child currently in treatment. We will serve their meals, clean their condo, play with their children, and Joe and I will have an extra role as shadows to the parent group meeting time. We will be in training this year to return in the future to lead this special group time when 10-12 sets of parents come together to share their journey and help each other find rest and healing through Christ. The families share their highs and lows and it only takes a few hours into the retreat before the whole group becomes one big family. We can't wait to meet our 2018 Lighthouse family and build bonds like we have the previous years. 

Once we return from the beach, it's back to reality in a really fun, new way...Kindergarten! Tillery will be at Luke's school and he's ready to show her the ropes and help her navigate this next phase. 

As all of these things happen over the next few months, we will be sharing with you all. It's cool to have this Tillery is Loved community that has followed us through our journey. We are excited to share these highs with you, as you have carried us through many of the lows. 

January 2018 Recap

Every 3 months, we head to Cincinnati for Tillery's follow up appointments and every January, we end up travelling in snow. This week was no different!

Tuesday, Knoxville schools were closed for weather and everywhere between here and Cincinnati looked snowy. The trip took longer than usual and was more intense than normal because of weather but we arrived safely Tuesday afternoon to our "home away from home".

Wednesday morning, we headed to the hospital for imaging. In addition to the normal brain MRI to measure and evaluate the tumor, she also had a 3D head CT to get a good look at the bone flap on the left side. Tillery has had many CT scans taken over the past 3 years and never needed to be under anesthesia. This time, however, when we tried to lay her on the table she had a total meltdown. The longer we are away from the hospital setting, the more things affect her and it makes me wonder what flashbacks she might be experiencing and what fears she has in her little mind. Add CT tables to the list of things that now give Tillery anxiety.

The team quickly decided that we had time and an anesthesia team already on hand so we took a breather and came back to the room and with me sitting on the table with her and a friendly Child Life Specialist holding an iPad for distraction, the anesthesiologist covered her mouth and nose with a mask and she calmly drifted to sleep. She's been put under anesthesia so many times and while it's still hard to leave her like that for a surgery, I'm pretty comfortable with the routine in radiology. I kiss her head, have nurses help me slide off the table and ease her down, and I head of to the cafeteria and gift shop for an hour while she's having her pictures taken.

After imaging, Tillery either takes her time waking up and drifts in and out for a bit while I sit in a rocking chair beside her waiting for her to finally be ready to wake. OR, she wakes up abruptly and fighting mad! This time, it was the latter and when I walked into the room, she was sitting up with the aide of 2 nurses and she was shouting sounds that didn't make any sense. They were removing the IV and she seemed to want to get out of the bed. Once they were done, I picked up my floppy ragdoll 4 year old and sat with her in my lap trying to calm her while she moaned. They never let us leave until they see her take a sip of juice and a bite of cracker but Tillery and I have a different tradition. I buy a bag of Cheetos in the cafeteria and smuggle them in to her for when she wakes up. She finally stopped making sounds when she saw the Cheetos and she ate a little snack while they ordered someone from transport to bring a wheelchair for us. We were wheeled up to the 8th floor to the neurosurgery department to have her shunt checked (magnets can alter the settings of a shunt and an MRI is like a giant magnet bed).

One of our regular nurse practitioners brought us back to check shunt settings and while we were in there she said, "Well, the tumor looks good." (This is always a statement that needs a little clarification.) Good like stable? YES! While I was thrilled to hear this, I decided to not fully believe it until I had the radiology report in my hands, which would happen the next morning.

Michelle also pulled up the 3d head CT. Now, we have seen Tillery's skull and brain from every possible angle. We have seen side by side images of pre and post surgery and compared past imaging to current imaging. We have seen CTs, MRIs, and x-rays, but we have never seen a 3D image. This scan blew my mind! We can look from any angle at exactly what her skull looks like. (I'm sharing imaging at the bottom of this post so if you aren't into looking a medical imaging, you can ignore but it really is cool to see what medical advancements have given us and how this image is helping us to make an educated decision about Tillery's care.)

Thursday was our long day of appointments with the full team. In addition to talking tumor and bone flap, we had a lot of other things to talk about. Being a cancer survivor comes with a long list of concerns, questions, and odd happenings. So here's a list of the things discussed and where we stand on things:

- The Tumor is Stable! While shrinking or gone seem like better options, in the cancer world, stable is still reason to celebrate.
- Tillery's g-tube site is doing something weird. Her tube was removed 1.5 years ago and last week, it started shooting out a clear liquid. After discussions and consulting with other departments, we are having a follow up appointment scheduled with general surgery to determine if there is any further action (like stitches, etc) that needs to happen.
- Tillery has a neuro-psychological evaluation scheduled in 2 weeks. This is standard for kids with brain tumors and timing is good as we talk about school options for next year. This testing will give us insight into learning delays/struggles and any other cognitive/developmental issues that we might run into in the future.
- In addition to the neuro-psych testing, we discussed Tillery's emotions. We are fully aware that 4 year old little girls are known for being overly dramatic but when your child also has a brain tumor in the cortex of the brain that controls emotion and has experienced trauma to the brain, everyone is a little more cautious about calling emotional outbursts "normal". It's difficult for Joe and I to parent because we don't know what Tillery is able to control vs. what is out of her control. Sometimes it seems like she can't "pull herself together" and we aren't sure if she is fully able to. So, when we are back in town in 2 weeks, we will also see a child psychologist to discuss what's going on and get a game plan to help her with coping and us with parenting/disciplining.
- Tillery loves school and is in a great program but we don't feel like she's where she needs to be with her learning. We don't know if the reason she doesn't write letters, name shapes, or count to 10 is simply because she chooses not to or because she doesn't understand. The above testing and evaluations will help with that but we are also going to talk with the school liaison from the oncology department and have her help advise us on possibly looking into special services for Tillery in school. She will also be able to communicate directly with the school to help coordinate any testing or services that might be needed.

The last appointment of the day was with neurosurgery. After looking at the CT from the day before, I felt sure Dr. V was going to tell us surgery was necessary. Instead, he came to us with 2 options: Do a surgery or Don't do a surgery. (Love when options are made to sound so easy.)

Tillery's left bone flap is basically an island. The bone is not connected anywhere to the rest of the skull. If it were touching bone to bone, it could fuse and the bone piece could continue to grow with the rest of the skull. As it stands now, the rest of her skull will continue to grow and that piece will stay the same size. It could also become softer over time. That piece is much more likely to fracture or even shatter if she experienced a head trauma (think falling down stairs, playground fall, car wreck). Without the surgery, she could be completely fine and she may never experience trauma and may never have problems. BUT, over time, that piece could chip or fracture and it could become necessary for surgery. If it's revised now, the bone can be moved forward to allow for it to fuse and grow and keep her own bone but if we wait, her bone may be too small or too soft and it may be necessary to use a synthetic piece instead. If we don't do the surgery and she experienced head trauma, her chances of serious consequences are increased. BUT, if we do the surgery now, she could later experience tumor growth that would then give us a reason to go back in on that side. Future surgery could cause this same problem or could give us an excuse to fix this without an additional surgery. In the end, there is no right or wrong but we are leaning toward going ahead and fixing it.

Having a medically fragile child is hard. Tillery appears so healthy and seeing her with peers, you may not know her history. But knowing her history makes it hard to see her with peers. We know that if she falls on the playground, what could mean a broken bone for another kid could be fatal for ours. If she takes a tumble down stairs, we hold our breath and hope she hits on her face because that's the safest place on her head to hit. If other kids are running and jumping, we get nervous about her keeping her balance amid it. I don't know that our fears will ever fully leave us but every little thing we can do to lessen them, we try to do.

Overall, this was a good quarterly appointment. We will be back in 2 weeks for some other follow ups and for the neuro-psych appointments. Then we will return in 3 months to do all these appointments again. At our next quarterly appointment, if the tumor is stable, we can then space appointments out to every 4 months.

Below are a few pics from our trip and the promised CT images.

We are also gearing up for the 2nd annual Tillery's Hustle for Hope 5k in May and getting churches signed up for Go Gray Sunday. Links for both are below as well.

Thanks for your prayers and support!

Tillery's Hustle for Hope 5k Registration: https://runsignup.com/Race/TN/Knoxville/TillerysHustleforHope5k?remMeAttempt=
Go Gray Sunday: https://www.alexslemonade.org/mypage/1403307

CHEETOS!

Settling in for a long day of appointments: Snack, remote, camera, thermometer

Checking to make sure the map is correct. 

The left side of this image (right side of her skull) is the synthetic bone flap that was placed about a year and a half ago. The right side of this image (left side of her skull) is the sunken bone flap we are currently concerned with. 

This is the left side bone flap. You can see that the bone seems to be "floating" not connected to skull bone.