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

Friday, July 14, 2017

Appointments Recap

This week, we returned to Cincinnati for our new normal of quarterly scans and appointments. Tillery had her tumor debulking surgery March 10th so this was our first imaging since the day after surgery. It's the first time to look at imaging when we were done with treatment and had no future plans for treatment.

The big news: The Tumor is Stable!

We had 4 appointments Thursday and while the biggie was the MRI, we had other questions and items on our agenda.

First up was a neurology appointment. Tillery has been on an anti-seizure med since she was 15 months old, when she was diagnosed with a tumor. At the time, it was given as a preventative medication since they did back-to-back brain surgeries and weren't sure how she would respond. She doesn't have a confirmed seizure history but there is a possibility that she had a seizure in-route to the hospital after her fall in November 2014. Since she's had no other seizure activity, we wanted to talk about weaning off of this medication. The neurologist is ordering an EEG of her brain when we come up for our next MRI to see if there is any activity that makes her feel that Tillery needs to stay on the medication. If not, we will begin weaning following our next appointments.

Next, we had her MRI. Tillery's port was accessed before we went to radiology and they decided to have me carry her into the MRI room and they would put her to sleep using her port. They cleaned her line that they had pulled behind her back and then said, "Mom, hold her tight." I gave her a big hug and said, "I love you, Til." She squeezed me back and said, "I love you, too, Mom!" and then went completely limp. It was a sweet moment until she started to thrash around and make a moaning sound and I remembered why I hate holding her while she is put under anesthesia. Then she finally stopped moving and the nurses helped me to gently lay her on the table.

I went to the cafeteria and had lunch with some friends while Tillery was in the MRI machine. About an hour later, the radiology nurse called to tell me she was starting to wake up. I went down the hallway to the recovery room and before I got to the door to knock, I could hear the screaming and I knew Til was awake. Tillery is either sluggish to wake up and we end up hanging out in recovery for an hour waiting for her to wake and nibble a cracker OR she wakes up like a firecracker and is mad and ready to go. Well, this time, she woke up mad as a hornet! When I got around to her bed, she was trying to sit up and was yelling about wanting to leave. But don't imagine a typical mad 4 year old, this was like a drunk 4 year old. She was slurring her speech, couldn't keep her eyes opened for long, and couldn't hold her weight up so she kept falling back on the bed. I got her in my lap in a rocking chair and tried to calm her but she just kept fighting me, too. She wanted a drink and when they brought her a sippy cup she yelled, "Not in a baby bottle!" then she squirted a juice box all over herself. They wanted to see her eat something but they want you to start with a saltine. Tillery didn't want a saltine, she called them "boring crackers". After I got her to eat one, still fussing, I asked the nurse if I could give her something else. When he agreed, I handed her a bag of Cheeto's and she cheered. She started stuffing them in her mouth as fast as she could! The nurse asked if I could have her slow down and I said, "No, I really can't." She perked right up and was ready to head off to the next appointment!

Next up was oncology, where Tillery's oncologist had already viewed initial imaging. The tumor was stable!! This meant that we could discuss our topic of the day for oncology - removing the port! Our Cincinnati oncology team will reach out to our East Tennessee Children's team to have them schedule a local outpatient procedure to remove her port. The port that delivered weekly poison into her bloodstream will be taken out and Tillery will have one less foreign object in her little body. It's one step closer to normalcy. Tillery can get a 100.5 temperature and we won't have to rush to the ER and she can finally go to the dentist for a teeth cleaning, without worry of germs. Once the port is removed, we won't have a need to go back to the hospital except for the quarterly follow ups. No more monthly pokes!

The final appointment of the day was neurosurgery. We already heard the tumor was stable but we had one other reason to meet with neurosurgery - an uneven bone flap! The bone flap on Tillery's left side hasn't fused perfectly since her March surgery. When the tumor was removed, the negative pressure caused her bone flap to sink in when it was replaced. Luckily, Tillery's surgeon feels like the bone is fused strong enough to not cause a safety concern. At this time, it's just a cosmetic issue. Because it's possible that Tillery will need future surgeries, we would look to correct the issue at that time. So for now, we are cleared from neurosurgery for 6 months.

It was a long day of appointments but overall was a day of good news. We will schedule a port removal soon and won't go back to Cincinnati until October. We are excited to continue life on this side. We might not be "normal" but we are pretty darn close!



We love how well Tillery is doing but we will never shake the images of all we have seen. Our daughter has been really sick and we've seen many other really sick children. We've lost friends to childhood cancer and we will never forget. September is Childhood Cancer Awareness Month and we already have our fundraising link live. To join us in finding a cure, click the link here or email us at hope@tilleryisloved.com.

Monday, May 29, 2017

Tillery's Hustle for Hope 5k

Sorry to be so late in posting a recap of the inaugural Tillery's Hustle for Hope 5k, life has been happening. That said, on with the recap...



May 20, 2017 was an amazing day!

We had many friends and family from various locations come to town to join us for our first 5k to fund pediatric brain tumor research. It was so great to see so many people who have been with us along the way and to get to share the joy that is Tillery's current health. But all those special friends and family only made up about half the crowd. The others were runners, philanthropists, and people just looking for something to do on a Saturday morning. We were so thrilled to expose a group of fresh faces to our cause and we left there with many new advocates for childhood cancer.

We had 4 awesome kids with us who are currently survivors or fighters who are winning the battle. Having friends like Brody, Wyatt, and Dallas alongside Tillery was a great way to show the crowd of about 150 runners who they were running for. We also had our new advocate mama friend Elizabeth there. She wasn't able to bring her daughter because Julia passed away last May from a DIPG brain stem tumor. The reality of our pediatric brain tumor world was staring these runners in the face. Also, standing with us was our hero, Dr. Sue Spiller. Dr. Spiller is the pediatric oncologist who treats many of the brain tumor kids in the region at East Tennessee Children's Hospital. Dr. Spiller even came ready to run for Tillery with her hair in a side ponytail!

 

 




It was a beautiful day for a run and after a few words from Joe, the crowd made their way to the start line. While so many were out pushing themselves on the course, Tillery was socializing on the playground and making new friends with people who had come out in support. Tillery posed for many pictures and told many stories to her new friends.

Top Finishers were:

Men's 1st Place: Eric Suchyta, 20:51
Men's 2nd Place: Bradley Farmer, 21:59
Men's 3rd Place: Andrew Keller, 23:08

Women's 1st Place: Jennie Tillery, 24:02
Women's 2nd Place: Macy Caldwell, 24:32
Women's 3rd Place: Dr. Sue Spiller!!, 27:48

Many thanks to all who participated and our awesome sponsors:

Holston Methodist Federal Credit Union
Ingles Markets
106.7 The Light
Fleet Feet
Acme Printing
Buttermilk Sky Pie Shop
Powell Church


With the help of our sponsors, our participants, and other donations, we raised over $10,000 to fund pediatric brain tumor research grants!

Plans are already in the works for the 2nd Annual Tillery's Hustle for Hope 5k.

Watch the video slideshow from the run here.







Friday, May 12, 2017

Go Gray Sunday

Go Gray Sunday is an idea we have had for awhile. It grew from all of the churches who sent cards, care packages, and prayers to us over the past few years. We began talking about inviting all churches to join us for an awareness day. May is brain tumor awareness month so we decided to coordinate with that and asked churches to participate with us on the first Sunday in May.

Joe pitched the idea to many of his clergy colleagues and I reached out through my clergy spouse friends. We shared the details with some other parents of children with brain tumors and had them send it to their pastors. Before we knew it, Go Gray Sunday was becoming a reality.

We had so many churches interested that our writer friend, Annette wrote a story for the United Methodist publication, The Call, and that article pointed even more people our way.

So far, we know of 21 churches that participated with us in some way. Some churches held fundraisers or took special offerings. Many churches included children with brain tumors during prayer time. One church created an awareness video that was shown in many of the churches. A bulletin insert was created with facts and statistics about pediatric brain tumors.

At our church, we shared our story and a message of the hope that has seen us through it all. To see our presentation from Sunday, click here. We would love to share our story with your group, too. You can email us at hope@tilleryisloved.com to coordinate a time for us to come.

You can hold your own Go Gray Sunday anytime. Contact us for details and we will help you make it happen!

So far, Go Gray Sunday has raised $3500 and we are still waiting on fundraising totals from many churches. To make a donation, visit GoGraySunday.com or mail to TIL Foundation; P.O. Box 12052; Knoxville, TN 37912.

Thanks again to all of the churches who have joined us. You are such a blessing to so many!


Thursday, April 13, 2017

Recap Video of the Journey

Thanks to all who have supported us along the way. We have had peaks and valleys but through it all, we never walked alone.


Thursday, March 16, 2017

Time to Push Pause

So last Friday, Tillery had a 9 hour major brain surgery and then was discharged on Tuesday with a prescription for Tylenol that she's never needed. That's how our girl does brain surgery! One surgeon actually commented to her that "It's not drive thru brain surgery, you are allowed to stay a few days and recover."

We have had our share of hard recoveries and delays that last an uncomfortably long time. In fact, having Tillery follow a plan and actually be ahead of recovery is very out of the ordinary, so we are having a hard time processing this! To think that she has to stay home from school and church and social settings for a few more weeks is hard with as well as she seems. It feels like she's right where she was this time last week.

So here is where things stand:
We will return to Cincinnati the first week of April. Tillery will have an MRI to make certain that her brain looks healed from surgery and then we will meet with her oncology and neurosurgery teams. She will have her stitches removed, we will give out hugs and high fives and we will say "see ya later" for 3 months. This will be our new routine: quarterly MRIs and follow ups with the teams. There is no future treatment plan at this time. As this chapter closes, we also close the entire volume. In the future, if there is growth, we will begin again, but for now we press pause on our cancer journey.

This is all very bittersweet.

Yes, we rejoice at how far she has come! Yes, we rejoice that there is no more chemo! Yes, we rejoice that there is no more surgery! BUT, there are things we know...

The chance of survival from a pediatric brain tumor is 66% over 5 years and we are at the halfway point.

The chemotherapy that ran through her veins 64 times has late side effects. We know a child who ended treatment on the same drug 2 years ago and is just now seeing the cognitive side effects.

The chances of developing a chronic health condition as a result of childhood cancer treatment is 95%.

Tillery's team seems to expect to see her tumor grow in the next 2-5 years, or to put that in Tillery's world, Kindergarten - 3rd grade.


We have watched many children leave this world. We have seen many children affected by harsh side effects. We have seen kids beat one cancer and then develop a secondary cancer. We have seen kids who heard the word remission and then had that word taken away.

We will not live in fear. We will also not live in ignorance.

This is why we push so hard for research funding. We know that Tillery's journey is never over. We live with so many unknowns and we push for research to lessen them. We want kids to not only beat cancer, but also to be free of it. We want the dark cloud of looming side effects gone. We want kids to be kids who grow up to be adults. And we want parents to get to breathe again.

We will continue to raise awareness and research funding. We will keep sharing our life and our daughter as the face of surviving. We will never forget the friends we've lost and will work hard to make sure you never forget them either. We will keep being real.

All that said, we hope our time of updating about Tillery's medical concerns is coming to a close. Thank you for loving her so much.

Saturday, March 11, 2017

Better Than the Best Case Scenario

When you have a baby you spend a long exhausting day at the hospital (even if you aren't the one in labor) and then at the end of the day, you are given an amazing miracle in the form of the gift of life. Yesterday was a long day and after logging many hours in the waiting room and many trips to the cafeteria, we were given an amazing miracle in the form of the gift of life.

Coming into this surgery we were struggling with the knowledge that this surgery was our decision. (Many factors played a part in making this decision and many of them had less to do with a medical necessity and more to do with insurance coverage.) Tillery's surgeon gave us the option to take a healthy and strong child into the operating room for major brain surgery or to wait and watch the tumor and return to the OR when growth happened. In the end, the decision was ours and we chose to proceed with a scary and risky surgery.

The plan was to make some room in in Tillery's brain. Her tumor involves a large fluid area that had formed into cysts and we wanted to break those pockets up so they did not fill with pressure. The plan was to try to safely remove some of the solid tumor as well. Because of the location of her tumor, we know that a full tumor removal will never be a safe option and she will always have some mass that remains. Now that she has completed chemotherapy, she will be having quarterly MRIs done to measure and track the size and make up of her tumor. This surgery allows for space for the tumor to have safe growth, if it does begin to grow again. We wanted to give room for new growth to not cause permanent brain damage. The surgery was estimated to last under 6 hours.

That was the plan...

Tillery's surgeon came to meet with us after surgery was completed...NINE HOURS LATER. He told us that he followed the same incision area from her first surgery for tumor debulking. Her bone had fused back so well that he had to make a fresh cut but that was good...hoping she heals like that again. Under the bone flap he found...wait for it...new brain growth!! This is so amazing and gives so much hope that after this surgery, the debulked areas will also fill with new brain growth! Wonderful! Because there was new brain growth, he didn't want to open the area very wide, not knowing what might be happening in that area. So he opened a smaller area than he originally planned and tried his best to work around the tumor to get the cysts broken up. (He first told us that he didn't think he got them all but a later CT scan showed all the cysts had been broken up!) Then for our final big news! Tillery's first debulking surgery removed about 10% of the mass and we were prepared for something similar with this surgery. Dr. V told us that he kept going, basically coring out the center of the tumor and he felt like he removed about 40%! FORTY!! The news from Dr. Vadivelu was amazing, miraculous news! Better than the best case scenario we had imagined! What an amazing blessing!

Today, Tillery had an MRI to confirm the news from Dr. Vadivelu following surgery and to make sure everything looked fine post op. All looked well and we were able to see on screen the side by side comparison images to show what a difference a day in the OR made in our precious daughter's brain.

Following the MRI, we were discussing extubating her. The neurosurgery team started removing her bandage to be able to reprogram her shunt following the MRI and she started fighting. Joe held her head and spoke softly to her while I held her IV covered arms down. A team gathered in the room and decided to go ahead and extubate even though it was still a little early. The tube came out with some fight from Tillery and almost immediately we were seeing our girl back with us. We would ask her questions and she would nod and then she started blinking her eyes. She has a favorite story she has recently made up about a pigeon who goes to a pizza place and we talk about all his favorite pizza toppings. There is one specific topping that Tillery thinks is really funny. As we were talking to her, I asked if she wanted a pigeon story and she nodded. When I got to the part where we discuss toppings, we all got teary eyed when she softly said "nachos", her favorite silly topping! And with that, we knew our girl was still with us!

The rest of today she's been becoming more and more alert. She's told knock knock jokes and requested favorite videos. She has Facetimed with a few friends. She ate 3 packs of graham crackers, 2/3 of a quesadilla, 1/2 a banana, and some peas and carrots. And she's gotten very silly and chatty tonight.

Tillery has especially liked her night nurse, Ryan. She told him all about her brother, Luke Phillips who is 5 and in Kindergarten. She told him about our white dog Emma who is at the pet hotel. Then she invited him to sit with us and be her best friend. As he set up her meds on the pump she kept asking about each one and then said "I'm just s curious bird!"

Yep, our girl is back. It's a miracle!




Here are links to some open fundraisers to help us fund a cure:

Awareness T-shirt
https://www.booster.com/gogray

Tillery's Hustle for Hope 5k
https://runsignup.com/Race/TN/Knoxville/TillerysHustleforHope5k

Stitch a Thon (pledge $1/stitch from tomorrow's surgery)
https://www.facebook.com/events/1855412508033850??ti=ia

To make a donation to Tillery's family
https://www.gofundme.com/fcfxb4


Tuesday, March 7, 2017

Last Day at Home, then Cincinnati Bound

Today was our last full day at home. Tomorrow, Tillery and Alana will head to Cincinnati to begin prep for surgery. Joe, Luke, Nana and Poppo will join us in Cincinnati on Thursday evening. Here is what our day will look like on Thursday:

We will wake up early for a big breakfast because Tillery cannot eat anything after 8:00 a.m. (until after her 5 pm scan!!!)
Meet with neurosurgery at 1:00 p.m. to ask final questions and sign all consent papers for surgery and anesthesia.
At 4:00, we report to radiology to get ready for a 5:00 p.m. MRI that will include having her head marked for surgery.
Following the MRI, Tillery will be admitted to A7, the neurosurgery floor of Cincinnati Children's Hospital. They want to keep an eye on her through the night and will be able to have her prepped and ready for surgery on Friday.

Tillery's surgery is scheduled for 11:00 a.m. Friday morning. They expect her to be in the PICU for 3 days and then to return to A7 for another 3 days. All of these days are long and exhausting. We appreciate all prayers and good thoughts you want to send our way.

If you'd like to join our Stitch-a-thon, donating $1 per stitch to pediatric brain tumor research in our honor, we will probably not have a number of stitches until early next week. Comment below if you are in for the Stitch-a-thon and we'll keep you posted!

Here are some pictures of our last day home...it was a busy one!



We met this Smokies mascot in the oncology clinic at ETCH. Tillery was skeptical and wanted to know "how did he get a superhero cape?" Good question!

One last snack from the ETCH oncology snack basket!

This afternoon we went to Luke's class and talked about Alex's Lemonade Stand Foundation and how they help kids like Tillery. We read the story book about Alex and her Lemonade Stand. The kids all got coin boxes to take home with them and we all enjoyed some lemonade while coloring ourselves at a lemonade stand.

Free Pancakes on National Pancake Day with the Vaughns! (Notice Tillery sat on their side of the table!) They were taking donations to our local children's hospital so it was a win-win.

Tillery got to meet some beauty queens. She's had a longstanding friendship for Miss Haven Wolfe who we met at the Ronald McDonald House but Tillery wasn't so sure about these new friends. She asked "How did you get to be a princess?" (She's really not taking anyone's accessories for real today. She wants to see some credentials!)