From Going Gold to Living Gold:

Written by Gina Bradley.

Local Childhood Cancer Survivors Share Their Stories

Going gold in September for childhood cancer awareness is an easy way to show support for families who are in the battle; it is a good way to remember those who are still surviving the battle, too.

 Trent Allison of Carthage spends his todays working as a rancher, but when this 39-year-old was 15 months old, he was life-flighted to St. Jude Children’s Research Hospital in Memphis, Tennessee. He was diagnosed with Histiocytosis X, or what is known today as Langerhans Cell Histiocytosis (LCH), a multi-system disease usually involving the bones. Trent’s mom Sandra Bains thought he had cradle cap, so the doctor gave him some special shampoo and eventually sent them to a dermatologist. But when he woke up Christmas Eve morning sweaty with a high fever, his mom and dad Sam Allison thought he had pneumonia and rushed him to Shreveport. Trent had a clavicle biopsy which came back inconclusive, but the day after Christmas a biopsy on his head, removing marrow and bone, revealed his cancer.

Admittedly, Trent was too young to remember many details, but he does remember the waiting room. “They also had a toy room where you could get toys and bring them out.” he says. Trent received chemo treatment off and on for 12 years.

“I was little and sick most of my life, so that was kind of hard. I could just bump my nose and set off a nose bleed that sent me to the nurse’s office at school.” His health made playing sports out of the question, and he even missed a lot of class as a result; but in 1980, Trent was only about the 700th child ever to be admitted for treatment at St. Jude’s Memphis location, and he is fortunate to be alive to tell his story today.

“Ten years ago, St. Jude called because they were doing a study on survivors of the cancer and the treatment.” says Trent. The hospital asked him to come in every five years so they can run tests and study how his treatment and cancer have affected him. “There were about 20 others there, but they were mostly kids. Last year when I went for my check-up, they did blood work and a stress test on my heart, among other things. The whole place is way different than it was 20 years ago!”

Trent is a quiet man, but he was glad to share his story. He admits that over the last eight years or so as he battled some internal complications, which turned out to be an issue with his pancreas not related to his cancer or chemo, it was on his mind that the disease could be back or he could be dealing with side-effects from his treatment. Before heading home to his wife Dana and step-daughter Cadee, Trent offered these words of encouragement, “The doctors are even better today than when I was sick. You just have to leave it to the Lord and to the doctors.”

Another local childhood cancer survivor certainly does thank her doctors. “My pediatrician should receive awards for catching my cancer so early,” lauds 19-year-old Macy Kathryn Isbell. Macy was lethargic and bruising really easily around the knees when her parents Sarah & Michael Isbell had her examined. Her doctor in Marshall saw the blastocysts in her blood work and told her parents to get in the car and GO as quickly as possible to Children’s Hospital in Dallas. “He was genius for catching it so early,” says Macy. ‘It’ was Acute Myloid Leukemia (AML), Macy’s diagnosis at four years old.

“I have brief flashes of memory about it,” recalls Macy, “but I’m very blessed to have no memories of the pain or the pain my family was in. I mean, my flashes are of the play room, toys, movies, paper planes, stuffed animals, and looking out the hospital room door that Christmas we spent in the hospital to see a big plastic mermaid that goes in the bathtub and being so excited. I still have my stuffed monkey from my cancer time with me today.”

Macy’s chemo treatment began immediately, but it was experimental in 2002. Because it was not FDA-approved, her parents had to sign release forms for her to undergo that treatment, for which Macy is still under long-term review for side-effects. “But my parents are the true warriors. They are the ones who had to deal with maybe having to bury me. I love them more than words can describe. Not until I was an adult did I process what they had to go through. My mom never cried in front of me; she employed that stiff British upper lip and never left my side the whole time.”

Children with cancer are immune-suppressed while in treatment, and during Macy’s four months at the hospital, followed by treatment at home, and then back and forth visits during her entire childhood, she also experienced a fungus in both lungs requiring three thoracotomies. Her surgeon said he wanted her to look good in her prom dress one day and therefore made sure those procedures would not interfere with that. “We sent my surgeon a picture of me in my prom dress 12 years later.”

Macy understands her responsibility as a childhood cancer survivor. “I have to be responsible with this megaphone I’ve been given.” And she does have a voice to be heard. Macy’s infectious zest for life makes her a passionate advocate for making long-term care and outreach available for whole families living in the aftermath of childhood cancer. “It’s not over when there isn’t healing. It’s not over when there is healing. Everyone assumes you are okay because you still have your baby, but you’re not.” Macy points out that treatment is getting into the realm of “sci-fi stuff in gene therapy, but the emotions are often neglected. My mom dealt with guilt taking so much from the generous community. And I’ve had to deal with what I’ve coined ‘Miracle Baby Syndrome.’ When you are the miracle baby who survived childhood cancer, everyone looks when you walk in a room and listens when you talk. You are praised and told over and over again how special you are and how the Lord has a plan for you. Not only did it take me longer to realize I wasn’t ‘special’ and that I had to work for things, but I had to do bigger and bolder things to get that attention I had always received just by waking up in the morning. It made for some bad behavior as an adult. It made interpersonal relationships a challenge. This Miracle Baby Syndrome also scared me, because I thought, ‘I have to go to a big university and be successful and cure cancer or I’ve failed, because I was saved for a reason.’ As a survivor, especially a young one, this sword is shoved into your hand, and you don’t always know what to do with it. You can’t put it down and pick up something else.”

She follows this insight with recognizing that her family and community responded the very best they could. “My family certainly passed the Your Child is Dying Test with flying colors, but there needs to be more mental care and education for AFTER.”

As a third year student at The University of Texas at Austin pursuing a major in Biology with a focus in genetics and genomics, and as a childhood cancer survivor, Macy encourages others to participate in charities and to help others. She knows she was gifted with these opportunities and passions, so she pushes to do what she does because she can help others. She also offers this to those families going through the battle, “Your baby won’t remember the pain, so hold on to what keeps YOU going; for my family, it was their faith and their community. Take care of yourself. If you don’t make it through, then your children can’t make it through.”

One local childhood cancer survivor can help you take care of yourself. Trey Hedges, now 42 years old, is a licensed massage therapist for medical, sports and relaxation needs, and he is ardent about his job, wanting to help others be their best selves.

“I remember every detail like it was yesterday,” says Trey. As a 10-year-old, he got in a “scuffle” outside Baker Koonce one day after school. When the other student punched him in the stomach and it sent him to his knees, numb from the waist down, he was more concerned that his sister Kim, a CHS junior who was on her way to pick him up, would see him fighting, and he would get in trouble. Somehow Trey managed to get up and get in her car, but he was experiencing such severe pain that his dad Carl Hedges knew something was wrong immediately. After all, he took Trey for McDonald’s French fries, and all Trey would do is suck the salt off them. After a week of blinding pain, he remembers hearing his mom Liz Hedges say, “We should stop at the clinic,” and then he passed out. When he awoke in a clinic room, he confessed everything about the fight and the pain he had been experiencing, so he was sent to Longview Regional to have tests run

The next day, Trey was sent to a kidney specialist who had his latest cat scan on the light board. The doctor showed them the spot on his kidney that “could be a tumor” and “could be cancerous,” but he told Trey to go home and sleep with his head elevated because he could lose his breath and die in the night. Once in the car, Trey cried for about 30 minutes to get it all out, and then he never cried again. His parents were taking him to Children’s Hospital in Dallas early the next morning, so Trey went home and slept with his head elevated. He knew the only thing he could do was pray and ask the Lord to take the pain. “The Lord took the pain, and I slept. I asked my mom the next morning if I still had to go to the hospital because the pain was gone. I had been in excruciating pain for weeks, and the Lord had given me a reprieve.”

But it’s a good thing they went to Dallas. Children’s began exploratory surgery at 6 AM, and Trey remembers waking up at 10 PM in ICU and not being allowed to see his mom or his dad. Come to find out, his surgery was exploratory because the particular cancer they found in Trey was, at that point in time, only found in three- to five-year-olds. When the team discovered the Wilms Tumor, they immediately sedated him to operate, finding the cancer had engulfed his left kidney and a quarter of his large and small intestines. When the surgery was over, Trey was 10 pounds lighter because they removed everything–the tumor, the kidney, and the portions of the intestines to which it had attached.

Trey then went through two years of chemo. His hair fell out twice, and he had to learn all his motor skills again. “I had to learn how to talk and walk and run. The talking was not so hard, but the motor skills were. Still today, if I get REALLY tired, I have ‘floppy feet.’”

He continues, “I’ve devoted my life to try and help others and to be in God’s will, which is why I went into sports medicine.” His parents were told he would be fortunate to graduate high school, but Trey attended Panola College, TCU, and SFA, earning two college degrees. He coaches various sports and teaches science in the Hallsville school district today, as well as managing his massage therapy business. He is also proud father of 15-year-old Baily, 11-year-old CJ, and 8-year-old River.

“I was considered cured at 12 years old, two years after they found the tumor. I would just encourage those going through a similar fight to remember that God has the final answer.”

 

Connect and network with local childhood cancer families:

www.goldnetworkoet.com

 

Support local childhood cancer families and awareness:

www.tylergoldrun.com

 

Trey Hedges Massage Therapy:

903-808-5568