Jacksonville boy took on 'superhero' fight with leukemia: 'I don't want to die'
Loxley Greensmith was only 8 but he knew something was very wrong with his young body. So did his mother.
What started out as worsening back pain in October 2020 led to the Jacksonville boy being unable to walk. He underwent X-rays and blood and bone marrow tests.
"Loxley is very smart. Even at 8 years old, he could understand," his mother, Brandy Morgan, said. At the time, she was a pediatric cardiovascular intensive care unit nurse at Wolfson Children's Hospital, so her son "was no stranger to medical jargon or equipment," she said.
Finally, doctors gave them an answer — B-cell acute lymphoblastic leukemia, a type of cancer of the blood and bone marrow. Morgan and Loxley's father, Dominic Greensmith, a training development specialist at Vystar Credit Union, sat the boy down, explained he had cancer and told him about the treatment that would soon begin.
"Loxley's reaction was quite stoic," Morgan said. "He honestly asked if he was going to die and if anything would hurt, and we honestly answered that the treatment is so that he does not die, and that yes, some things might hurt, but we would get through it."
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Two years later, after receiving care at Wolfson and Nemours Children's Health in Jacksonville, he and his parents are counting down to Dec. 3 — his last chemotherapy session. And on Nov. 19 he will be the Honored Hero of the Leukemia & Lymphoma Society's 2022 Light The Night fundraiser in Jacksonville.
“It was indescribably difficult at the beginning," Morgan said, "but … Loxley’s bravery has served as inspiration to us all. He’s truly a real-life superhero after all he’s endured."
Blood cancer diagnosis every 180 seconds in U.S.
The local Light the Night is one of about 100 across the country where walkers carry illuminated lanterns to take steps to end cancer. White lanterns are for survivors, red for supporters and gold in memory of loved ones lost to cancer.
Proceeds go toward research, education, support, policy and advocacy. Such campaigns have raised about $1.5 billion for research into therapies.
"Every 180 seconds, someone in the U.S. has their life turned upside down by a blood cancer diagnosis," Coker Powell, the society's chief development officer, said. "Through Light The Night, communities envision a world one day without the devastation of blood cancer."
Before Loxley was diagnosed, when his symptoms were worsening but doctors had no idea what was amiss, his mother made them keep looking.
"I was his mom, and I just knew my child. I knew something was wrong," she said. "We had been to several doctor appointments before we finally ended up in the ER because I just felt something was wrong. … Trust your gut. Mom's intuition is the extra vital sign and it is probably the most important one."
Even after they had a name for what afflicted Loxley, the news was a mixed bag.
"My initial reaction was relief, because we had an answer and a plan," his mother said, "then dread because how could I ever watch my son suffer through this? It was very difficult for dad, as well."
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The timing — amid the COVID-19 pandemic — generated mixed feelings as well.
"Everyone around us was already isolating, wearing masks and staying socially distant," she said. "It was both terrifying to go through treatment during this time and a bit of a relief because the entire world was already being so careful."
But as coronavirus safety regulations eased, everyone else came out of hibernation. Loxley could not do the same.
"Life became a little harder for us at home," Morgan said. "Loxley could not interact with cousins or friends. He missed playdates, birthdays, get-togethers and holidays."
The side effects of his illness and treatment were also difficult. His hair fell out, which prompted whispers from other children. And the medications "made it difficult for him to walk or regulate his emotions which caused a lot of residual anxiety and depression," his mother said.
For a time, Morgan left her job to stay home with Loxley. Down to one income, the family depended on financial and emotional support from local organizations and national organizations, such as the Leukemia & Lymphoma Society.
Loxley's stoicism only occasionally wobbled.
When he was about to go under anesthesia for the first time for doctors to insert his port, the device that would deliver his intravenous chemotherapy, he was uncharacteristically fearful and anxious.
"He cried and said, 'I don't want to die. Mommy, daddy, I don't want to die. I'm scared.' Repeatedly," Morgan said. "It was the most heart-wrenching experience I have ever, ever had. That's saying a lot when I worked with children who were having open heart surgeries daily."
700 chemotherapy treatments, 38 pills a week
He had a lot to be scared about but stayed the course.
Loxley has been hospitalized three times and had about 700 daily chemotherapy treatments. He takes 38 pills a week, including chemotherapy, antibiotics, appetite stimulants, steroids, nausea medication and antacids.
He has been under anesthesia about 50 times for lumbar punctures, bone marrow aspirations and chemotherapy delivered into the spinal fluid. He has received five blood transfusions, several ultrasounds, an MRI and an echocardiogram.
Despite all the pain, poking and prodding, he eventually came to accept his diagnosis with a maturity beyond his age.
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"When I say, 'I can't wait for you to be free of these meds, buddy,' his answer is 'Yes, but without them, I wouldn't be alive right now, Mommy,'" she said. "It means he understands how important his treatment is."
He used his creative mind as an escape. As an only child, he spends much of his playtime "in his own imagination," Morgan said. He loves to play video games, strategic board games and building toys.
Also, his four close-in-age cousins — Naji, Kalia, Nora, Aria and Selah, who he considers some of his best friends — kept him busy with playdates and sleepovers called "Cousin Weekend." And he and a friend from preschool, David, have maintained a close friendship.
'Trust his body to do what it's supposed to do'
Now 10, Loxley is in the fourth grade and being homeschooled by his mother, who works from home writing continuing education courses for health care providers. The last chemotherapy treatment is finally on the horizon.
"I am absolutely elated," Morgan said. "I'm excited for him to get his full strength back and his time back with friends and family. But, I'm also terrified. We are about to stop giving him lifesaving support. Now, I have to trust his body to do what it's supposed to do."
But she still has to be on guard.
"I have to navigate a world that believes COVID is over … and protect his fragile immune system without stifling his return to life," she said. "We will always be fearful of …relapse. Every bump, bruise, fever will send me into a tailspin."
Loxley has physical therapy sessions lined up to regain some of the strength he lost. Once a month, he will visit the oncology clinic and will be monitored for the rest of his life, transitioning to adult oncology when he turns 18.
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After the last chemotherapy, he will be in a three-month "infection precaution" period. During that time, he cannot attend potential "super spreader" events or play in lakes or springs. Once it's over, he has plans to return to nature and make mud pies.
"He loves the real Florida: oceans, springs and lakes," Morgan said. "He looks forward to the day he is allowed to go back into the lakes and springs."
bcravey@jacksonville.com, (904) 359-4109
LEUKEMIA & LYMPHOMA SOCIETY'S LIGHT THE NIGHT WALK
Jacksonville's 2022 Light The Night fundraiser is 6 p.m. Nov. 19 at Riverfront Plaza, 2 Independent Drive. The schedule begins with festival activities, followed by the 1-mile walk at 8 p.m. and a fireworks show at 9 p.m. To donate, register or get more information, go to lightthenight.org/events/jacksonville. For more information about leukemia, lymphoma or the society, go to lls.org. Blood cancer patients and their families may get more information from the LLS Information Resource Center at (800) 955-4572, Monday through Friday, 9 a.m. to 9 p.m.
This article originally appeared on Florida Times-Union: Jacksonville boy epitomizes need for Leukemia & Lymphoma Society
