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.
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
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!
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
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.
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!
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
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.
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
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
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 brother...like 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
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: https://www.facebook.com/eastongoadfoundation/
is another kiddo we never got to meet but who has inspired us greatly. We know
all about Tony’s story from his parents who continue to fight for kids like
ours and theirs. I met the Merks when they were volunteering to serve brunch at
the Ronald McDonald House and I noticed the grey ribbon on their shirts. We
talked about their son and our daughter and formed a bond. Since then, we have
stayed in touch and have had the opportunity to participate in the 5k held in
memory of their son and have also given blood in the blood drive in his memory.
They are amazing parents who continue on after great loss and we are bless to
call them friends.
is the youngest of Rick & Lynne Merk's four sons. He was diagnosed
with medulloblastoma, an aggressive pediatric brain cancer, on October 27, 2008
– one month shy of his fourth birthday. He underwent brain surgery, 31
cranio-spinal radiation treatments, and high-dose chemotherapy. Tony
handled all of this like a superhero. He made being stuck in the hospital
fun – always finding games to play and things to do. He loved to scare
the nurses with his toy snakes, bugs, and spiders. Tony enjoyed singing
and dancing, setting up a carwash to wash his Hot Wheels cars, picnics on the
hospital floor, and much more. We even wrote a song called “My own
superhero” about how strong Tony was – and “with God on my side, I don’t have
to hide. I am my own superhero.”
had a year of clear scans during which he attended pre-school and played with
his brothers - treasuring EVERY moment of life and spreading joy to many.
When Tony relapsed in June 2010, his parents had to rely upon clinical
trials and unproven treatments as there was no known cure for relapsed
medulloblastoma. Tony passed from this earth on July 4, 2011 at age 6.
Pray~Hope~Believe was the theme for his journey and is now his family's
theme for healing.