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

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!)

Friday, February 17, 2017

Not So Rare

A dear friend asked if she could share Tillery's story on Rare Diseases Day (Feb. 28). As I started to think about it, I realized that the "rare" disease that we are fighting isn't really that rare.


Low grade glioneuronal tumor with mesenchymal differentiation...yes, that's rare. That's the official diagnosis for Tillery's mass. It took 5 weeks and pathologists across the world to finally give a name to this evil we face. When they did name it, we were told that researching it would be difficult because there isn't another case of this exact tumor ever documented. So I guess if you think about that, she's pretty rare.

But brain tumors are categorized into some groups that tend to look and respond similarly. Tillery's falls into one of the most common groups "Low Grade Gliomas". Within that group, Tillery's tumor falls into the category of Low Grade Gliomas - NOS (not otherwise specified) so she's basically in a catch all/other category but still in a bigger more common group.

And then, if you back out further, brain tumors are the second most common form of childhood cancer. Leukemia is the largest majority of childhood cancer types, which is why it's been researched more and has much better outcomes. Brain tumors have been on the rise and are much less rare in the childhood cancer world these days, especially since brain tumors are a common secondary cancer form for children who are originally diagnosed with a different form of cancer. So a brain tumor diagnosis in a child isn't as rare of a thing as you might assume.

Then, to back out further to the classification of "childhood cancer", now we aren't even talking about something rare at all. One in every 285 children will be diagnosed with cancer before the age of 20. Tillery's brother's school has 550 kids in it so statistically, 2 of the kids roaming the halls with him daily will be diagnosed during their childhood. And to back that further, Knox County Schools has 59,516 students enrolled, which means statistically 209 Knox County students will be diagnosed during childhood. That doesn't really sound that rare at all, does it?

We have friends with children diagnosed with diseases that you can name every other child with that disease because it's that rare. We also have friends with children who have no name for their diagnosis because it's so rare, they are the first case. At least for us, we fall into a larger, more common diagnosis that allows for more awareness and more treatment options. Even so, childhood cancer only receives 4% of cancer research funding, making you wonder, if they can't find cures for adult cancers, how will they ever find a cure for childhood cancers? And if they can't cure childhood cancer, how do parents of children with truly rare diseases cope with the knowledge that their rare disease gets even less, if any, funding.

We don't have the answers to solve these issues. What we do have is YOU! As you learn about our story and share our story, it raises awareness. As we share about other kids and other diagnosis, it raises awareness. As awareness is raised, funding can be raised. So continue to follow our story and talk about our story. The more we talk about it, the less rare it seems.


Friday, February 10, 2017

Surgeries

Today we are exactly one month out from surgery. In 4 weeks, we will be sitting in the B3 waiting room at Cincinnati Children's Hospital as Tillery is in the operating room for the 14th time.

Every childhood cancer journey looks a little different. Some kids are admitted to the hospital for very long periods of time and spend much of their time in isolation. Some kids lose their hair and spend their days vomiting from the chemotherapy. Some kids go through daily radiation treatments. For Tillery, her journey has been filled with surgeries.

The thing about Tillery's surgeries is that a majority of them are not "cancer related". I mean, they are all as a result of her brain tumor/cancer diagnosis but most of the surgeries aren't directly "for the tumor".

One surgery removed a pseudocyst that had grown in her abdomen at the base of her shunt.

One surgery was to place a g-tube for feeding when our stubborn 16 month old, who lacked control in most aspects of her life, simply stopped drinking and eating.

A fall that caused a brain bleed resulted in a craniotomy to remove her bone flap and allow room for swelling, then a surgery to replace the bone flap a few months later, and then another surgery a year and a half later to replace her bone with a synthetic piece after her bone never hard fused.

She's had 3 surgeries to place a shunt, 2 surgeries to remove shunts, and one crazy freak accident in which an external valve just fell out of her head while she was sitting in the hospital bed watching movies and we had to rush her to the OR to replace it.

So the only 2 surgeries she has had that were directly related to the tumor were the surgery to place her mediport, through which she received chemotherapy, and the very first surgery she had to debulk the tumor and take samples for pathology.

In one month, Tillery will have her 2nd major brain surgery to remove portions of her tumor. I really wish I had an image of the MRI to post here to explain what her tumor looks like. If you will imagine looking head on at her little face, the tumor is in the front of her head on her left side. In the imaging, it looks like it takes up about 25% of her head space. The tumor is made up of a solid portion that is more in the center of her head and it is surrounded by a large cystic portion. During surgery, the neurosurgeon will break up the cysts and that section will fill with normal brain fluid. He will also remove a safe portion of the solid mass. This should be the last safe amount of tumor removal she will have done. In the future, any debulking surgeries will be to remove new growth.

We are at peace with the decision to proceed with this surgery. The team has eased our fears by telling us that this surgery will be less intensive and less risky than the first. After surgery, there will be less pressure in Tillery's head and less foreign mass. The post-op scan will be the least scary looking scan we will have ever seen of our daughter's brain. We know the risks and we know the positives and we are confident that this is the right decision. Thank you for your support and your prayers. This journey is less scary with so many people in our corner.

Here are pictures from previous surgeries:


October 2, 2014 - First major brain surgery


October 6, 2014 - First shunt placed


November 15, 2014 - Craniotomy to remove bone flap


January 2015 - Replaced shunt for fear of infection


January 2015 - Bone flap replaced


April 2015 - Mediport placed


September 2015 - Shunt removed, EVD placed


September 2015 - More shunt pieces removed


October 2015 - Shunt placed


July 2016 - Bone flap replaced