Wednesday, September 20, 2017

9/20 – Abby

Have you ever gotten one of those direct mail pieces from St. Jude asking for donations? Did you know the kid on the letter?

About a week after we returned home from our Lighthouse retreat, we got a piece of mail from St. Jude and when I opened it, I took it to Joe and said, “Isn’t this Abby from the beach?” I messaged her mom and, yes, it was “Abby from the beach”.

Read the below account of Abby’s diagnosis day. Most cancer parents will give you a similar story of everything is normal and then the next day, nothing is normal ever again. That’s what cancer is like.

Diagnosed with ALL T-cell 6/15/15 two months before her 7th birthday.

Abby is lucky they have found successful treatments for her specific type of cancer. However, she has experienced terrible side effects and who knows what other side effects will show up years from now. Still she is fortunate. Many, many of our friends have cancers that have not had enough research to find a successful treatment. As a nine year old, she has already seen more friends die than most people see in their entire life. They all deserved a cure but we need more research to find them.

The beginning of summer break 2015 was great! We were going bowling 2-3 times a week, swimming, playing every day, and we were expecting a baby girl at the end of July. My oldest daughter had just graduated high school and I was trying to spend as much time with her as I could before she left for college.

On June 13 parts of our city and parish were having record flooding but we were on our way to go bowling. As we were turning the old Toyota Corolla into the bowling alley we were rear ended by a big truck. The car was totaled but we were all okay. The doctors didn't believe me when I said I was only having really strong Braxton hicks contractions and we had to spend several hours in the labor and delivery unit. Abby laid in the room with me and slept and I noticed she had a little higher temp than normal.

Two days later, Monday, June 15, Abby was complaining of her knee hurting so I took her to the doctor. I almost told her to take some Tylenol and stop complaining. I am so glad I didn't. 4 hours later I was told she had very progressed leukemia. Her blood was 93% cancer and I had no idea she was that sick. That same day, or maybe it was very early the next morning she was airlifted to Memphis for treatment.

It was just a normal day and then BOOM everything changed forever.

#Abby #StJude #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

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

Tuesday, September 19, 2017

9/19 – Jalie

Another little survivor we met on our Lighthouse retreat is Jalie. Read below from her mother, Jules.

Jalie Carrasco is a beautiful 5-year-old who was diagnosed with Pre B ALL PH+ leukemia when she was one. Jalie is a smart, outgoing, positive little soul that loves to dance, sing and make everyone laugh and loves her family and friends. Though she is in remission she will remain in treatment till she is in her pre-teens. Through the side effects this beautiful girl continues to show her strength and beauty through it all. She is my hero and my best friend. Her love for God is amazing and she is my reason for joy and love. Jalie is truly the overcomer.

#Jalie #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

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

Monday, September 18, 2017

9/18 – Bear

This week, we are sharing stories of kids we met on our Lighthouse Family Retreat beach trips. The past 2 years, we have gone to the Florida panhandle with a group of families with children with cancer and have had amazing weeks of sharing our lives. The parents bond during morning sessions and we leave with a strong support community. The kids are all normal kids for a week away from what their reality is back home. Today, we’d like to introduce you to our friend, Bear.

“Bear was born March 27th 2015, almost 9lbs, big, healthy baby boy. Everything was totally normal until 3 months old, when he started to refuse to eat. He would only take 4-6 oz of formula all day long! He started to lose weight fast! By 4 months old he started weight checks, at 5 months old he was diagnosed failure to thrive and a referral was put in to see a specialist. Before we got into the specialist, one night Bear's eye started to jerk back and forth like crazy (nystagmis). I hurried to the ER worried it was so some sort of seizure, with my older 4 kids I have never seen anything like this! The first local ER, told me he was fine, to get him seen by his pediatrician and into an eye doctor. I knew it was something more and was not okay with that answer! We loaded up and drove the hour to the closest children's hospital. Within 15 mins if being seen they had him admitted and an MRI scheduled the next morning. That morning, Oct 13, 2015, was the day our lives were turned upside down. Our empty room was filled with about 15 doctors and nurses all at once. We were told our 6 month old baby had a big mass in his brain. They then figured out everything, why he wasn't gaining weight and not eating, he was diagnosed with diencephalic syndrome, the location of the tumor was causing it all. His tumor is inoperable, they have not even been able to biopsy it. He started chemotherapy as soon as possible. He did 18 months on Vincristine and Carboplatin. He also had a g-tube placed to gain weight. He had to be on continuous night feeds. Many appointments of jumping up and down for just an ounce gained! After his first birthday, we started Pediasure and he started to eat by mouth more and more! His g-tube was removed in June 2016! Having MRI every 3 months. Every MRI was better! It was getting smaller! After the treatment plan was up and many stable MRI’s, the doctor said it was okay to stop chemo! Jan 12, 2017 he was done! Then we had MRI in April that showed concern for growth, but our hopes were high it was just a contrast thing, we would have to wait until the next one to know. July 6th 2017, we found out it had grown for sure, grown actually bigger in that 6 months than it was when we saw it the first time! The next day he started chemo again, 2 new drugs. He is currently going every 2 weeks. He is a typical 2 year old right now, through all of this he keeps amazing us all! He is a chatter box! His eyes still do have very bad nystagmis that is more noticeable some days more than others. He is now 30lbs, normal size! It’s still a struggle but we just count our little achievements and all he has overcome daily!”

To follow Bear’s story, visit his Facebook page: Blessings for Bear.

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

Sunday, September 17, 2017

9/17 – Caralyn

Caralyn was diagnosed with a Pilocytic Astrocytoma at the age of 7. She has endured 9 surgeries, and received 33 months of weekly chemotherapy. The tumor has remained stable for the past 2 years. Caralyn is an old soul that loves to bake. She also makes quick friends with the adults she comes in contact with. Along our journey there have been great hardship and setbacks yet also incredible blessings. Our family has been uplifted by so many and have formed amazing relationships. This past April, Caralyn asked to be baptized while serving at Lighthouse Family Retreat where the previous year we had been retreat family. Caralyn self-selected her life verse, Philippians 4:13 " I can do all things through Christ who gives me strength." Whatever the future holds, we find peace in knowing God is in control and is using her to reach others.

Friends, God is using Caralyn just as her mom said above. Last year, we met Caralyn and her family at Lighthouse Family Retreat and at the time, Tillery was preparing for a major and scary surgery and was still on weekly chemo. She wasn’t walking yet and her future was so unknown. Caralyn’s story brought so much hope to us! She was a kid who had gone through so much, like our daughter had, and she had experienced many setbacks, as our daughter had. Meeting a child who was living with a mass in her head who had also gone through so many trials, helped us to see that it was possible for us, too. God sent Caralyn on our retreat to remind us that He was there even through the hard times and He would still see us through. We thank Caralyn and her family for their example of trust and faith.

#caralyn #lighthousefamilyretreat #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

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

Saturday, September 16, 2017

9/16 – Peyton E.

About a year after Tillery’s diagnosis, my cousin was working as a nurse in her local ER when a child about Tillery’s age came in. The symptoms he was having reminded her of the symptoms Tillery had and she began to feel that this child was going to go down a similar path. My cousin was there when the MRI results came back and was there as the family was transferred to the larger children’s hospital. Read what Peyton’s mom wrote about her son…

“Peyton was born on October 15, 2013. A healthy 6lb 7oz baby boy. A couple of hours after having Peyton the doctor came in and told me he discovered during my c-section that my ovaries were never formed correctly and he was shocked that I was able to have a child let alone 2 of them. He advised me to have my tubes tied because it was too dangerous to conceive another baby. I complied as I was blessed to have two. Peyton grew very quickly, going to 75% on the growth chart in just two months after being born. Fast forward 1 1/2 years later and Peyton started throwing up at random times during the day and night and started losing his balance. We took him to the doctor 3 times and were told he had an ear infection, acid reflux, and were even told it was from him growing so fast! This went on for 3 weeks with him getting progressively worse. On the morning of August 22, 2015 my husband went to work and my step children were asleep when Peyton started throwing up again. I asked my stepson to watch my daughter while I ran to the E.R and that I would be back shortly. Peyton didn't return home until 2 months later. The doctors at the E.R listened to his symptoms and did a M.R.I which showed a large tumor in 2 of the 4 ventricles of his brain. After being rushed to Children's hospital in Birmingham and having a shunt placed and the tumor 99% successfully removed we learned the he had an ATRT brain tumor, the most aggressive childhood brain tumor that less than 11% of children survive. The chance of recurrence is 90% in the first year of removal.

We lost our precious son on February 9th 2017. Now, we fight even harder for the kids that have cancer and for the hope and prayer to prevent further cancers in children!”

Peyton’s family has kept his story alive by joining with Children’s Miracle Network to include Peyton in their fundraising drive in Wal-Mart. Peyton’s mom is a manager at Wal-Mart and her store has signs and t-shirts in memory of her son to help raise awareness and funding for the local children’s hospital that helped their family.

#superman #peyton #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

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

Friday, September 15, 2017

9/15 – Jaxon

As a seasoned childhood cancer family, our friends and family members often reach out to us when those they know have found themselves in a similar boat as us. A few months back, I received a text from a dear friend, letting me know her cousin’s child had been diagnosed with a brain tumor. Jaxon was about the same age Tillery was at diagnosis and he was diagnosed at the same hospital. His diagnosis: AT/RT, the same as Owen and Ollie, whose stories were told the past 2 days. Here is Jaxon’s story.

“My name is Jaxon Williams and I am 2yrs old. On Father's Day 2017 I suffered my very first seizure that took me to Children's Hospital at Erlanger in Chattanooga, TN. It was discovered the next day that I had a brain tumor and surgery for biopsy and partial resection was scheduled for that Friday. The next day I was diagnosed with a Rhabdoid Tumor also known as ATRT. This is a very rare form of cancer that occurs in only 10% of children. My doctors decided that it was time to relocate me and my family to St. Jude Children's Research Hospital to begin treatment. I was welcomed with open arms at St. Jude and quickly begin treatment. I am participating in a clinical trial treatment at St. Jude to help fight my cancer. So far, after my first round, my doctor's say I am doing phenomenal. Me and my family put our full trust in God and His plan for me during this season. Please pray for me and my family and all children fighting childhood cancers. With your prayers and support, we can win the fight to end childhood cancer together. Will you join our fight?”

A fundraiser will be held for Jaxon’s family tomorrow in Dayton, TN. If you are in the area, drop by and show some support. Here’s the link with details

#teamjax #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

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

Thursday, September 14, 2017

9/14 – Ollie

In the pediatric brain tumor world, there are certain diagnosis that make you lose your breath. As parents of a child with a survivable mass, these diagnosis with little to no chance of survival seem so unfair. Our journey has been rocky and challenging but we have remained focused on reaching the other side and moving from fighter to survivor. For some parents, finding a survivor with their child’s diagnosis is nearly impossible. That’s why we love to introduce people to Ollie! Read Ollie’s mother’s words about her brave little owl…

Oliver "Ollie" was 8 months old when he was diagnosed with AT/RT of the spine (a central nervous system cancer predominantly found in the brain) on April 26, 2014. He had an 8% chance of survival upon diagnosis and due to the location of the tumor we were told he would never walk even if he did survive. Ollie underwent emergency surgery to debulk the tumor and then began chemotherapy. Over the following 7 months, Ollie endured 5 rounds of chemotherapy; two that included stem cell therapy. After the second round of stem cell therapy, Ollie went into liver failure due to the harshness of the treatment. As an act of compassion an unapproved by the FDA medicine was used in an attempt to save his life and Ollie got to go home after a 2 month stay in the hospital. His body could no longer do anymore chemo. After he recovered, Ollie finished treatment with 30 rounds of radiation to his spine. In January of 2015, MRIs showed that Ollie was NED (he had no evidence of disease) and continues to be so today. Kids are never considered cancer-free due to the high percentage of relapse or secondary cancers that can occur due to treatment so this is why we say NED. We then began the long journey that we still continue today to help Ollie thrive. During treatment one of the chemos paralyzed his swallowing muscles so Ollie is gtube fed and goes to feeding therapy to help strengthen his muscles. Although he was never supposed to walk, with the help of an AFO and several surgeries and therapy, Ollie doesn't just walk, he runs and is a wild little four-year-old boy. In May, Ollie underwent surgery for a cecostomy port, an access button so that we can daily flush his nerve damaged bowels out using saline water and glycerin. Through it all, Ollie has never lost his charming smile, his easygoing spirit or his irresistible joy in the little things. We are often in awe and humbled by our miracle and we try to never take for granted the time God has given us with him. We are acutely aware that all it takes is one MRI to send us back into battle but until then we choose to not dwell in fear, and to live and love fully while also being a voice for our fellow warrior families and their brave beautiful children.

You can follow Ollie’s story on Facebook at Prayers for Ollie.

#prayersforollie #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

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

Wednesday, September 13, 2017

9/13 – Owen

Owen Robert Steinmann 11/29/16-6/13/17

From the moment Owen was born, his parents knew that God wanted them to share him with the world. The first three months of his life were filled with developmental milestones, gummy grins, and delightful coos. He was absolutely perfect and incredibly smart. He developed a fan club fairly quickly as his parents shared him with the world through photos and videos.

He was born like any other boy. In a hospital in that most suburban of suburbs, Cary, North Carolina. His dad was concerned he was a little funny-looking, but he knew he’d love him anyway.

On the night of March 5, a mass was discovered on Owen’s brain that would later be identified as AT/RT, a very rare brain tumor that as yet has no cure. The next three months were an incredible whirlwind. After his tumor was removed, we traveled from Duke University Hospital to St. Jude in Memphis, left our jobs, moved to Kingsport, had everything we owned packed up and moved by other people (an experience unlikely to be repeated), went home on hospice only to come back for more treatment, went on vacation only to be airlifted back to Duke and then to come home for the final time.

Owen endured so much through all of this. He had surgeries to remove his tumor, to remove and place shunts, and to have a central line placed. He had deadly chemicals pumped into his body to try to kill a much more deadly disease. He was robbed of the chance to have a normal childhood and instead spent much of it in hospital or recovering from treatment. He fought harder than anyone we have ever known against impossible odds, before he could even talk, or walk. He fought with the amazing support of friends, family and his medical team.  On Tuesday, June 13, 2017, Owen passed away.

Through all of the hard questions, the pain and the tears, we remember Owen for why he lived.

And this is why:  He lived to be his parent’s sweet son, so loved. He lived to share his sweet smile and laugh with a world that needs a little light. He lived to show us all how to endure the impossible with grace, and strength. He lived to give us hope, and to remind us to never give up, no matter the odds. He lived to change us, and make us a little less selfish, a little more giving, more patient, and more kind.

Owen was unconditional love. Courage beyond measure. Strength unbending. And a boy who really loved his mommy. He truly embodied the meaning of his name; fighting relentlessly as a young warrior. 

#OwenistheMiracle #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

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

Tuesday, September 12, 2017

9/12 - Ethan Parsley

Ethan is a Knoxville kid that we never got the chance to meet. Even still, I knew I had to seek out his mom because I have heard his story from so many people. I have heard about him from other parents who were going through treatments alongside him. I’ve heard about him from friends in Knoxville who had followed his story. And I heard about him from the clinic, from doctors and nurses who still speak his name and remember the kid who touched them. So even though we never knew Ethan personally, we wanted to include the story of a kid so famous he will never be forgotten. Read these words from his mother, Denise…

“Ethan Parsley had just turned 11 years old when he suffered a football injury to his knee, which lead to the discovery of a tumor.

Dr. Spiller at East Tn. Children's Hospital diagnosed the tumor as Ewing Sarcoma, which is a rare type of childhood cancer. Further scans revealed that the cancer had already spread to his lungs, skull, hips and spine. He endured months of chemo, radiation and major surgeries, all the while continuing his 5th grade school year at home with his home bound teacher. The doctors, nurses and entire staff at ETCH took such amazing care of Ethan and loved on him continuously.

Needless to say, Ethan's world was turned upside down. But he never complained. Not once. He kept up the sick, some days he couldn't get out of bed. He was utterly exhausted...emotionally and physically, yet he continued to push through the countless pokes, hospital stays, nausea, vomiting and school work.

His cancer fight ended when Jesus took him home on Dec. 16, 2015, just after his 12th birthday. His strength and courage will always be remembered to those who love and miss him as #EthanStrong.”

The Ethan Parsley Foundation was established to honor the memory of Ethan.

#EthanStrong #EthanParsleyFoundation #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

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

Monday, September 11, 2017

9/11 - AJ

AJ, 7, is one of those people who looks for the good, the positive, in everything that happens. We have always called him The Mayor because he befriends everyone he meets. And he never stops going; he has always, even in the womb, been incredibly active. Brain tumors didn't change any of this about him.

At 4 years old, AJ was diagnosed with multiple brain tumors, several of which are inoperable. He lost the ability to walk, he was cognitively impaired, and his vision deteriorated. Yet through that, he never lost himself. Holding strong to his faith in God and having the determination of a warrior, AJ now is a "normal" first-grader. When people ask him about his low-vision (an optic nerve tumor has left him considered legally blind), he lets them know there are other kids from the pediatric medical community who have had much bigger obstacles than him. He recalls not being able to walk and so he pushes himself to climb rock walls. And he loves a good victory so he is an avid sports fan, especially when cheering for his beloved Tennessee Vols!

AJ has a VP shunt and received a year of chemotherapy. He is considered stable, but his condition is something we will deal with forever. AJ has fully embraced our philosophy to "just say yes" while we can. This has allowed AJ the opportunity to serve as the Children's Miracle Network Hospital Champion for the state of Tennessee. He proudly talks about living a full life despite his condition and the amazing treatment he received at East Tennessee Children's Hospital.

Before moving to Knoxville, we were already following some of the Knoxville brain tumor warriors on Facebook. AJ was one of the kids we followed closely, especially since he was diagnosed around the same time as Tillery. Before moving to Knoxville, we reached out to his family for advice on schools, doctors, and things to do. AJ’s family has done an awesome job of getting his story on the local news and they have touched hearts of many in this community. They do a lot of raising awareness and fundraising for East Tennessee Children’s Hospital, the same hospital where Tillery received chemotherapy.

Follow AJ’s story at Prayers for AJ Cucksey on Facebook:

#prayersforaj #goAJgo #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

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

Sunday, September 10, 2017

9/10 – Alexa

If ever there was an angel on Earth, you’d find her to be sweet Alexa Lee Hartenstein. She came into the world on March 16, 2009, with the most calm and peaceful personality, which grew with her into childhood. She always had a smile on her face, and she was so full of laughter and joy that it was contagious! Life with Alexa was as normal as life could be until the day her parents heard the words that no one ever dreams they will hear: “Your child has cancer.”

In September 2011, after a month of unexplained vomiting, falling down with every few steps, and many other symptoms, Alexa was diagnosed with a brain tumor – an sPNET, and it was extremely aggressive. It was a parent’s worst nightmare, but somehow Alexa managed to keep a smile through it all! From needle pokes to MRIs, chemo treatments to stem cell transplant, brain surgeries to radiation, Alexa endured more in three and a half years than many of us will face in a lifetime. In December 2014, after learning of her fourth relapse which had taken over her brain and spine, Alexa was moved to hospice care. Even then, her laughter and positive attitude never faded, and she continued to entertain her family and friends with her jokes and endless giggles. Alexa Lee was a fighter, and she showed what fierce determination looked like, right up until the very end. On February 26, 2015, her journey with cancer came to an end, and she earned the most beautiful set of angel wings.
Although Alexa’s life was cut short by cancer, she taught everyone who knew her just what it meant to live. To laugh amidst the worst of storms, and to enjoy every moment, good or bad. To be kind and show compassion to each person you meet, no matter the circumstances. To never give up the fight, even when things get hard. To find joy in every day and give back to those who needed it most.

*Writeup from Team Alexa Fighting Back, a fund through Cure Childhood Cancer in memory of Alexa

Follow Team Alexa’s Facebook page

Yesterday, we shared about Red Fern Goes Gold, a childhood cancer event in St. Simons Island, GA. This is an event put on by Team Alexa. If you are in the area, join them for Red Fern Goes Gold on September 30 -[%7B%5C%22surface%5C%22%3A%5C%22page%5C%22%2C%5C%22mechanism%5C%22%3A%5C%22page_upcoming_events_card%5C%22%2C%5C%22extra_data%5C%22%3A[]%7D]%22%2C%22has_source%22%3Atrue%7D.

#teamalexa #redferngoesgold #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

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

Saturday, September 9, 2017

9/9 - Chaseman

Tillery’s dad and Chase’s dad go way back to college days. They were in each other’s weddings and have supported each other through many milestones of life. When Tillery was diagnosed in September 2014, the Busbys reached out with support for our family. They shared our story with others, sent their love, and sent their prayers. They never would have imagined that a year later, we would be doing those same things for them.

Joe got the call from Chris as Chase was being transferred from their local hospital ER to the nearest children’s hospital for more testing. Chase had been sick over the weekend and when he was taken to the ER, blood tests revealed that there was a problem. It could have been many of a long list of things, the scariest of those being leukemia. Most of the time, you try not to focus on the worst-case scenario and try to focus on more likely options. For the Busby family, the worst-case scenario became their reality a few days later when it was confirmed that Chase had acute lymphocytic leukemia, the most common type of childhood cancer.

The protocol for ALL involves 3 years of treatment, even though most kids are considered “in remission” after a month on chemo. Because these kids like Chase go into remission so quickly, people can forget that their family is still going through a lot. Clinic visits continue, chemo continues, spinal taps continue, blood draws continue, ER trips continue, fear continues. Even with the most common type of childhood cancer with the highest survival rates, families still experience a loss of the life they once knew as their kids experience heavy chemotherapy and many drugs in order to “look normal”.

Today, Chase is back to feeling good and playing hard. His 2 big sisters, Gracie Jane and Lily, are his biggest cheerleaders and always visit the hospital with big smiles of support for their brother. The Busbys work hard to raise awareness and funds in their hometown of St. Simons Island, GA, where they are partnered with other families to do big events that bring the community together against childhood cancer. If you are in the area, join them for Red Fern Goes Gold on September 30 -[%7B%5C%22surface%5C%22%3A%5C%22page%5C%22%2C%5C%22mechanism%5C%22%3A%5C%22page_upcoming_events_card%5C%22%2C%5C%22extra_data%5C%22%3A[]%7D]%22%2C%22has_source%22%3Atrue%7D.

#teamchaseman #redferngoesgold #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

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