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.

9/24 - Tony

Tony 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.

Tony 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.” 

Tony 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.

#TonyBoy #PrayHopeBelieve #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

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

Saturday, September 23, 2017

9/23 – Iyana

“Iyana was diagnosed with ATRT (atypical teratoid rhabdoid tumors) when she was 6 months old. She endured 3 rounds of high dose chemo, 48 doses of focal radiation and countless amounts of experimental medicines once we were out of options. Iyana loved to meet new people and she had a wave and a smile that would always be embedded in your heart if you ever came into contact with her. Iyana passed away on October 18, 2016 at 2 years old. Iyana fought hard and smiled through it all. We miss her every day and love her just as much.”

We met Iyana’s family at the beach. We watched Iyana smile and wave at everyone in the tent and on the beach. We watched Iyana’s parents and siblings soaking up every minute of a family beach trip. That week, 10 families with children with cancer came to the beach for a retreat but only one left to go home on Hospice care. Only one family lost their child just a few months after we all left that place of rest and hope. Iyana’s story hit us all hard because we all knew that childhood cancer is often not about genetics or life choices. It’s random and can hit anyone and in some of those, it hits harder. Iyana’s story could have been any of our children’s stories. It could be your child’s story. Childhood cancer doesn’t care if you have a signature wave and infectious smile. It never fights fair.

I’m sorry if you never got to see her wave. Because of cancer, you’ll never have the chance.

#Iyana #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

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

Friday, September 22, 2017

9/22 - Ben Boone

Ben was diagnosed with brain cancer at 10 years old. When he was told about his tumor, his first question was "when can I go back to school?" That was September of 2016. I am thrilled to say that he just started back in August of this year. It was a long hard road but we made it. There are many more hurdles to overcome but we made it this far. We are blessed.

These words from Ben’s mom brought me to tears. So simple but so powerful. A kid who just wanted to be a normal kid and go to school. We often focus on the surgeries and the chemotherapy and all the hospital time. But sometimes we forget that for the kids, they are focused on how all of that takes them away from their friends and their normalcy. For them, the hard part is being different.

Welcome back to school Ben! We hope it’s an awesome year!

#fearlessben #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017
To support childhood cancer research in honor of kids like Ben, make a donation to our team (TIL Foundation) with Alex’s Lemonade Stand Foundation.

Thursday, September 21, 2017

9/21 – Lillian

Lillian’s story is the most heartbreaking story of a survivor I have ever heard. We were able to hear her parents tell pieces of her story over breakfast at the beach and even in a group of seasoned cancer parents, their story had us all in tears. Read the words from Lillian’s mother about her amazing, miracle child.

Our Lillian, otherwise known as "Toots", has stage 4 neuroblastoma. She is the youngest of our 4 children. We were so certain we were having a healthy baby after many detailed ultrasounds. As soon as she was born, we knew something wasn't right. She had blanched spots in her skin. The second day, her liver had noticeably grown in 24 hours. The third day, scans started and a diagnosis of internal hemangioma. Fast forward 10 days. Lillian had been on blood pressure medicines and steroids to slow the heart being robbed of blood as the hemangiomas continued to grow. By 10 days old, her stomach was extremely distended and her liver protruding even on her back. At 12 days old the word "cancer" entered into our family and on Mother's Day 2015, I held my 2 week old newborn baby girl as chemo attempted to destroy the cancer that had taken over her body. The main tumor was on her right adrenal gland and had spread to her liver, bones, and skin. However, the chemo did nothing. At 4 weeks old we were advised that she needed emergency radiation treatments to attempt to stop the cancer in order to make it to the next eligible chemo treatment just a week later. Radiation only fueled the fire and gave us many nasty side effects that effect Lillian today. The chemo didn't work nor the radiation. The treatments were stopped until doctors could grasp the situation while my baby lied in ICU dying. She had daily blood transfusions, a feeding tube, medicines, continuous pain pump, oxygen, and many many medicines to try to keep her stabilized. We needed healing but God wanted to make a miracle. Nothing had worked. Our prayer changed from healing to begging for a miracle to heal our newborn and as a promise in return we would use her for His glory. Our prayer was heard.

While in treatment Lillian's tumor thankfully receded. We continued with the suggested salvage chemo that the doctors described as the "big guns in a small dose." Lillian is now 2 and full of life. We have 4 therapies a week to keep her development on track as more than likely side effects from treatment.

Recent times have been challenging as she has been choking while drinking. She has 4 therapies per week to help with speech, swallowing, occupational therapy, and developmental. She is absolutely amazing and watching her play like a typical 2 year old gives us son much hope as well as others. She is full of personality and spunk. As Lillian's parents, we are passionate about research to find safer chemos and treatments. Our 2 month old had to have adult chemos when they started salvage chemos because there isn't enough research on pediatric cancer treatments. While Lillian is done with chemo now, her doctors are not using the terms “NED” or “remission” because she still has spots on her liver that they are monitoring.

#Lillian #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

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