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

Friday, January 19, 2018

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:
Go Gray Sunday:


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. 

Saturday, September 30, 2017

9/30 - Tillery

Three years ago today, Tillery was diagnosed with a large cancerous brain tumor at only 15 months old. She has had 15 surgeries and 64 doses of chemotherapy and she’s only 4 years old. Last month, Tillery said goodbye to the oncology life when she had her port removed following 6 months of tumor stability. Her tumor caused some severe physical delays that she fought hard to overcome (and continues to fight through weekly physical therapy and gymnastics). Tillery still has about half of the mass in her brain, which can never be fully removed due to its risky location. Instead, Tillery goes every 3 months for an MRI to make sure the tumor isn’t actively growing and as long as it remains stable, she continues to live life as a normal kid. Tillery’s oncology and neurosurgery team do expect growth again over the next few years, in which case, Tillery will begin back on weekly chemotherapy. Her tumor will continue to go in waves of growth and stability throughout her life, resulting in her never being able to go into remission. Currently, we say we are “on the other side” of her cancer diagnosis and it’s true what they say, the grass really is greener here.

These pictures are how our journey began. 

#tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

To support childhood cancer research in honor of kids like Tillery, make a donation to our team (TIL Foundation) with Alex’s Lemonade Stand Foundation.

Friday, September 29, 2017

9/29 - Destiny

On this date 3 years ago, we were a normal family, no sickness, no sadness. Six hours away, another family, who we had never met, was having their last normal day, as well. Tomorrow, is the 3 year anniversary of diagnosis day for these 2 sweet girls. Our daughter Tillery, is now celebrating survival. Our friend Destiny was also diagnosed with a brain tumor on September 30, 2014. Destiny passed away 16 months ago.

Destiny loved princesses and spent much of her life dressed as one. She loved coloring, making cards for other cancer kids, playing with her brother and friends, going to school, and cuddling with her momma.

Statistically, 9 kids are diagnosed every day with a brain tumor so it was crazy to meet someone diagnosed on the same day at the same hospital living at the same Ronald McDonald House. We also know that statistically 1/3 of those kids won't survive, so it was devastating to have Destiny be one of those.

So again, I ask, what would you do if you knew that your entire life was going to change tomorrow? I encourage you to do it!

#Destiny #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

To support childhood cancer research in honor of kids like Destiny, make a donation to our team (TIL Foundation) with Alex’s Lemonade Stand Foundation.

Thursday, September 28, 2017

9/28 – Dominic

The first time I ever met Dominic, it was in the kitchen at the Ronald McDonald House at breakfast time. There weren’t many people in the kitchen and when I walked in with Tillery in the stroller with a helmet on her head, I heard a boy’s voice say “She’s gorgeous!”. I always remember this because it touched my heart that he saw past Tillery’s helmet and tubies and just saw her for the cute kid she is. As the next few months went by, I got to know Dominic and his family better. They became a popular crew at the RMH and the hospital as his mother was like the house mom, his dad was everybody’s buddy, his sister was a sweet young lady we all talked with, and Dominic’s personality earned him the nickname “The Mayor”.

Dominic was diagnosed with HLH, a rare form of cancer that has a research facility based at Cincinnati Children’s. His family came from Florida to Ohio in the winter in an attempt to save their son’s life through a bone marrow transplant. In addition to all the scary long-term possibilities with HLH, a BMT had its own long list of potential side effects. The scariest possibility was graft vs host disease (GVHD), which became a battle for Dominic soon after his transplant. He spent many months in and out of the hospital. Much of his time was spent in isolation and he occupied himself by building elaborate things out of Legos and watching his favorite wrestlers on TV. His family was always optimistic and focused on a full healing, however Dominic’s healing came in a different form than they had hoped. On October 15, 2015, Dominic moved from his earthly life to his heavenly one.

I’ll always remember an encounter I had with Dominic’s dad the night before he passed away. I had gone to the hospital chapel to pray for Dominic and his family. I knew the end was near and my heart was broken for my friends. After praying for comfort and peace for Dominic’s family in the chapel, I walked out into the near empty hospital corridor and almost ran right into Dominic’s dad. I didn’t know what to say or how to even begin but I felt a strong pull to go to him and pray. So I gave him a hug and asked if I could pray with him. I don’t know where the words came from and I will never remember what they were but my soul was touched as we bowed in prayer together in that dark, empty hallway. Dominic died the next day and while I was very sad, I was also very much at peace because the previous night, I knew that God had prepared a place for him.

#LamboyStrong #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

To support childhood cancer research in honor of kids like Dominic, make a donation to our team (TIL Foundation) with Alex’s Lemonade Stand Foundation.

Wednesday, September 27, 2017

9/27 - Bennett

I’ll always remember the first brain tumor kid we met. We were at the Ronald McDonald House and a family was unloading groceries in the kitchen like they lived there (it was early in our stay there and we couldn’t yet image being that comfortable there). They looked at Tillery’s head and asked, “Brain tumor?” It was so strange for us until we saw an adorable bald girl with a scar on the back of her head come around the corner. Immediately, we had a connection to them. 

Over the next few months, we shared a house with Bennett and her family. Well, most of that time, Bennett was in-patient across the street so we really shared a house with her baby sister, Juliet and her grandmother, Diana and occasionally saw her parents run through on their way to or from the hospital. Bennett’s tumor was an ETANTR and while the resection surgery removed 99% of her tumor, the chances of surviving with any remaining piece of tumor was 0%. 
Bennett’s family stayed very positive and tried hard to give Bennett as much normalcy as possible. I remember once coming out of my room and encountering Bennett having a temper tantrum alone in the hallway. I looked around wondering how she ended up there and then rounded the corner and saw her mom. I realized that amid all the treatments and hospital stays, she was still a kid who needed to pitch a fit and her mama was letting her do it. That moment always stays with me because it’s those times of realness that remind you they are more than just a patient.

Bennett endured some of the yuckiest chemo treatments I’ve ever heard about. Talking to her family and reading their updates was hard, especially as our daughter was improving. We saw less and less of them as they spent most all of their time at the hospital.

I’ll always remember the day that Bennett’s family moved out of the Ronald McDonald House. I was so heartbroken and I remember thinking I might never see her again. What I had recently heard and seen of her seemed that her time left would be very short. But that wasn’t the case! Bennett lived another 10 months and she really LIVED during that time! It wasn’t a time of hospital beds and tubes and treatments. It was a time of laughing and playing and being a family. I know that time was so hard on her family but I would smile every time I saw a new post or picture and heard a good report. About a month before she passed away, I got the opportunity to see Bennett one last time and swing beside her on the playground. She was smiling and playing just like any other kid, nothing like the sickly child I had seen many months before. I was filled with joy to see her and that’s the Bennett I want to always remember. The girl who was living!

#BlessingsForBennett #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

To support childhood cancer research in honor of kids like Bennett, make a donation to our team (TIL Foundation) with Alex’s Lemonade Stand Foundation.

Tuesday, September 26, 2017

9/26 – Timothy

Timothy was nine months old when the word cancer entered our lives. He had a routine MRI of his spine to rule out a tethered spinal cord as a cause for his motor delays. His spinal cord was fine, but a radiologist spotted a shadow on his liver. We were called immediately back to the hospital for an ultrasound and a second MRI was scheduled. We met his oncologist and the man who would become his primary surgeon at 7PM on a Friday night. We were told not to hope that the biopsy would be benign but to hope that it would be the more treatable of the pediatric liver cancers. Our baby played peek a boo with a fellow while we talked about surgery, chemo, and life expectancy. After the biopsy, that same fellow kept our sweet boy happy while we were told that the existing protocol for Stage III hepatoblastoma left his chances of survival grim at best. We enrolled him in a trial of what has now become the primary protocol for the disease. All four drugs were designed for adults. The list of possible immediate and long-term effects seemed endless.

The next six months were a constant barrage of treatments, side effects, complications, and desperate hope to see the next day. The trial study included drugs with possible late effects ranging from hearing loss to low bone density to an increase in risk for leukemias. Every day, we watched as these drugs were infused into his body by way of a central line. He underwent numerous surgeries, exploratory scopes, and radiology procedures. Before he was two years old, he had been under anesthesia more than forty times.

Now, Timothy is almost eight years old. He finished chemo six years ago. We have what we refer to as souvenirs from treatment. His bone density is low. At age four he fell on our carpeted floor and suffered a spiral femur fracture that led to an ambulance transport from our local hospital to his primary hospital. He spent six weeks in a cast from his toes to his chest. He has permanent hearing loss and wears hearing aids. He has a feeding tube that will be a part of him throughout his life. All of these are at least in part from the chemotherapy agents that saved his life as a baby.

He also carries with him a resiliency that defies explanation. Timothy is joyful. He is comfortable in places that most adults would find intimidating. I think that is the legacy living through cancer and continuing to live with the late effects has given Timothy. He knows that life is meant to be lived, and he lives it with joy and presence in each moment.

Timothy’s family became a part of our family while sharing the Ronald McDonald house together. Timothy’s experience as a baby, helped him to be compassionate to all around him. When he met Tillery, it was during the helmet months and he immediately dubbed her “Baby Hat”. Timothy and Tillery became good buddies at the RMH and they always pick right up where they left off when we see each other now. As Tillery’s parents, we love Timothy’s survivor story as it has always given us a ray of hope on stormy days.

#Timothy #BabyHat #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

To support childhood cancer research in honor of kids like Timothy, make a donation to our team (TIL Foundation) with Alex’s Lemonade Stand Foundation.

Sunday, September 24, 2017

9/25 – Easton

Easton gave us the gift of home in Cincinnati. We had been away for about 3 months and those 3 months had been really scary. They had also been very lonely. Then, while petting therapy dogs in the lobby of the Ronald McDonald House, we heard a twangy voice that sounded just like home. That voice belonged to Easton’s big sister, Emma, and I immediately had her direct me to her mama and we became instant friends. Easton was our first little Cincinnati friend who also called Tennessee home and having other Southerners in the house did our hearts good. Read the words below from Easton’s mama about her baby boy. 

Our son Easton Jedediah Goad was born on December 27, 2013. His big sister Emma was thrilled beyond words and wanted to hold him every second. Our new family of 4 was complete and we couldn't be happier.

My daddy came and spent the whole day at the hospital on the day I was induced. He was one proud grandpa. However, I did not know that would be the last time I would see him. My daddy went home and passed away in the night. The next few days were a blur. I literally came home from the hospital to the funeral home. I really didn't know how to feel because who in the world gives birth and then loses their daddy the very next day?

After daddy's funeral, our life returned to a new "normal". Easton had failed his newborn hearing screening, so over the next few months we saw a doctor almost every week. I was so upset that Easton could not hear, but knew he could overcome this challenge as he got older.

Fast forward 4 months to April 2014. Easton was fussy and began running a low grade fever of 99-100. I felt he was either teething or possibly getting an ear infection. On Monday, April 28th I took him to see our pediatrician. They confirmed that they felt like he had a virus and that with a little time he would be as good as new. I was to alternate Tylenol and Motrin and it would be no big deal.

On Wednesday, April 30th our pediatrician's office called to check in on him. He was still feverish and wasn't eating well and was very lethargic. They wanted to see him again if he still had a fever the next morning.

On May 1st, I loaded my babies up, dropped Emma, our daughter, off at the babysitter and headed to the doctor with Easton. The doctor we saw was very thorough. He said that "clinically" Easton looked perfect, but he would do some blood work just to make sure we weren't missing an infection of some kind. So, he pricked his little toe and I waited.

He returned to our exam room with results in hand. He sat down on his stool and put his hand on top of mine. I knew then that there was something wrong. Easton's red blood cell count and platelets were low. He said that this could be indicative of a type of blood cancer.

I called my momma and she came to be with me. We took Easton to the local hospital and had the blood work repeated. The results were the same. We were sent immediately to Vanderbilt Children's Hospital. The next hours were such a blur. I could not comprehend what was going on around me. How could this perfect and innocent little being have something as terrifying as cancer? We spent the next 11 hours in the ER before they admitted us and we were sent to a room. We spent the next 13 days in the hospital with no real answers. They did a bone marrow biopsy, spinal tap and lots of blood work and transfusions of platelets and blood.

We were discharged with no answers. The months of May, June, July and August were spent making 3 trips per week to the Hematology/Oncology clinic for blood work, and transfusions if necessary. By mid August, Easton's tests had stabilized and it looked as if whatever had been wrong was better! We were so excited and so was our Oncologist!

On August 26th, that all changed. Easton began passing white stool and we were advised to get to Vanderbilt immediately. We returned once again to the ER. This time for an ultrasound, blood work and other tests that I honestly can't even remember. Late in the night, they came to us and told us that there was something in Easton's liver that appeared abnormal. It would require a biopsy. So, he was scheduled for a liver biopsy and we got the results the next day.

On August 27th at the age of 8 months old, our son was diagnosed with a granularcytic sarcoma in his liver, which was pretty much a ball of Leukemia in his liver. We now had to decide on a treatment plan. Chemo, bone marrow biopsies, spinal taps, liver biopsies, bilirubin, hemoglobin, neutrophils would all become a part of our everyday lives.

Easton had 6 rounds of chemotherapy. With each round, the cancer cells would decrease, but as we waited for his counts to recover the cancer cells would grow again. In November, we were given the news that chemo was not going to make the cancer go away and that Easton needed a bone marrow transplant that would have to happen in Cincinnati.

We loaded up our belongings and moved our lives to Cinci. We were fortunate enough to receive a room at the Ronald McDonald House. There, I met friends who became our family. Easton received his transplant on Dec 29th. The prep chemo was very strong. They told us that he would feel as though he had the flu. We had typical setbacks of high blood pressure, low oxygen, weight loss that resulted in getting a feeding tube, but overall Easton did very well with his transplant! On Feb 12, we were released to actually go live as a family of 4 for the first time in a year at the Ronald McDonald House. His care was going to be around the clock, which was stressful, but we were THANKFUL! For 14 blissful days, our family got to be "normal"! We got to be a momma, daddy, big sister and little a normal family!

The week of Feb 23rd, however, things started to change. Easton was very uncomfortable. He was very irritable and at times inconsolable. By Wednesday, we had slept hardly any and decided to go back to the hospital. They told us that he would at some point have to be hospitalized, but that it was completely normal. Most of the time, it was just a simple infection that could be treated and cleared up in no time. So, we were concerned, but not afraid.

Once back at the hospital, they did X-rays, ultrasound, and scheduled him for a bone marrow biopsy, which was standard procedure because we needed to check the stays of his donor cells and see what progress we had made.

On Sunday morning around 7:30, it was confirmed that Easton's Leukemia had returned and this time it was in his bone marrow, there were spots in his lungs and his liver was still involved. What was supposed to be a routine hospitalization resulted in the news that our son...our 14 month old baby would not recover.

They immediately began making plans to get us back to Nashville, TN so that we could be surrounded by family and medical staff that was like family. However, Easton's illness was progressing much too fast and that was just not possible. Our plans had changed and it was now our job to keep him comfortable. We had to try to get Emma to Cinci to explain what was happening and let her say her goodbyes. The day was like a whirlwind.

Emma arrived on Sunday evening around 6:30 pm. We did what has to be the hardest thing we will ever do in our natural lives. We told our 5 year old daughter that she was losing her brother. She was devastated and I'm sure didn't quite understand all of it. Easton Jedediah Goad gained his wings at 7:10 p.m on March 1, 2015.

Children are NOT supposed to die. Parents are NOT supposed to bury their children and 5 year olds are NOT supposed to lose their siblings...their lifelong best friends...childhood cancer is real and it is brutal. We never thought it would touch us or our family, but it did. Our kids deserve a cure!

Easton’s family continues to support families like their own in memory of their son. The Easton Goad Foundation was established after his passing and they raise money to donate to The Ronald McDonald House and Vanderbilt Children’s Hospital. The Easton Goad 5k will be held October 21 in Middle Tennessee and you can learn more about it or how to support their foundation on their page:

#EastonGoadFoundation #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

To support childhood cancer research in honor of kids like Easton, make a donation to our team (TIL Foundation) with Alex’s Lemonade Stand Foundation.