Not Letting Fear Win: How 18-Year-Old Neely Faces ITP With Courage
On March 26, 2025, 17-year-old Neely Ward of Deer Creek, Oklahoma, found himself growing more concerned about a rash around his feet and ankles that refused to fade. He had first brushed it off as possible sand flea bites from a rock‑climbing trip, but after a couple of weeks with no improvement, he knew it needed a closer look.
He texted a photo of it to his mom, Blaine.
What seemed like a simple rash would change everything.
A Race Against Time
Blaine sent the photo of the rash to her sister-in-law, who works as a nurse at their family doctor's office. They got Neely an appointment for the next morning.
"The doctor was looking at it and said, 'Well, this isn't just a rash,'" Blaine recalled. "He said, 'It's actually broken capillaries. It's called petechiae.'"
The doctor ordered immediate blood work and warned them it could be something serious — possibly a bone marrow disorder.
Neely and Blaine went across the street to their local hospital for the blood draw. They expected to wait a day for results. Instead, Blaine got a call within 30 minutes of arriving back at work.
"They said, 'Neely needs to come right back to the emergency room. His platelets are at 2,000,'" Blaine said. "I had no idea what his platelets were supposed to be at, but I knew it wasn't that. And the nurse sounded very nervous."
When they retested Neely's blood in the emergency room, the news was even more alarming. He had zero platelets.
Normal platelet counts range from 150,000 to 450,000 per microliter of blood. Platelets help blood clot, preventing dangerous bleeding. With zero platelets, even a minor injury could be life-threatening.
"It was terrifying," Blaine said. "The nurse and the physician assistant that came and talked to us — I mean, they're calm, but you can tell there's a nervousness, an urgency."
Within hours, Neely had a spot waiting at Oklahoma Children's OU Health, part of the University of Oklahoma’s academic health system. The family faced a difficult decision: wait for an ambulance or drive Neely the nearly two-hour journey to Oklahoma City.
"My mind was, I want to get Neely there right away and the ambulance would probably be the quickest, the safest," Blaine said.
But waiting for an ambulance might take longer than driving directly, she thought, so the Wards made the choice to drive.
"The first thing that I prayed to God was, 'Please don't let us get in a wreck,'" Blaine said.
The Diagnosis
At Oklahoma Children's, a team of experts ran tests. Neely had felt fine — no symptoms beyond the rash and a large bruise on his thigh that he'd attributed to tripping in the yard. But the blood work told a different story and the team at Oklahoma Children’s OU Health Jimmy Everest Center for Cancer and Blood Disorders in Children stepped up to pinpoint the cause.
Finally, OU Health pediatric hematologist-oncologist Dr. Osman Khan, M.D., M.S., associate professor and interim chief of the Section of Pediatric Hematology-Oncology at the University of Oklahoma College of Medicine, came in with answers.
"He said, 'I really think it's this ITP autoimmune blood disorder,'" Blaine said.
Immune thrombocytopenia (ITP) is a rare condition where the immune system mistakenly attacks the body's own platelets, destroying them as if they were harmful invaders. Sometimes it's triggered by an illness or injury, but often the cause remains unknown. There's no simple test for ITP — doctors diagnose it through a process of elimination, ruling out other blood disorders and cancers. While there's no cure, treatments can help manage symptoms.
"He's like, 'We don't know exactly what causes it,'" Blaine said. "It was something we'd never heard of before, something that no one in our surrounding communities had heard of before. And so that alone, I think, is kind of scary."
Understanding ITP
The American Academy of Pediatrics estimates that about 5 to 10 children per 100,000 are diagnosed with ITP each year. In Oklahoma, about 8 children per 100,000 are living with ITP at any given time.
ITP comes in three types:
- Acute ITP: short-term, often seen in children after viral infections
- Persistent ITP: lasts three to 12 months
- Chronic ITP: lasts more than a year, more common in adults
Signs and symptoms include:
- Tiny red or purple spots on the skin (petechiae)
- Larger bruises (purpura)
- Frequent nosebleeds or bleeding gums
- Blood in the urine or stool
- In severe cases, internal bleeding
Severe bleeding risk occurs when platelet counts drop below 10,000.
The Search for Treatment
The most frightening realization came when Blaine and Neely learned he'd had the rash and dangerously low platelets for at least two weeks, possibly longer.
"He was wrestling before and he went rock climbing with his dad — like so many things that he could have had a serious injury and bled to death," Blaine said.
Neely had explanations for everything — the bruise from tripping, the rash possibly from rock climbing. Like many teenage boys, he hadn't thought it could be serious.
Despite having zero platelets, Dr. Khan felt confident sending Neely home that same day with high-dose steroids.
"We're even in more shock — he has zero platelets and you're sending us home?” said Blaine. “But Dr. Khan told us that's what a steroid does. It boosts those platelets right away."
The steroids worked initially, and Neely's platelets jumped to 90,000, but he didn't tolerate the medication well. It made him break out on his face, but worse than that, his joints and muscles were extremely sore. It even hurt to walk.
Two weeks later, his platelets crashed back down. A second round of steroids in late April followed the same pattern, up, then down again.
Dr. Khan decided to watch and wait, hoping Neely's body might correct itself. His platelets climbed to 23,000 on their own, raising hopes. But they didn't go much higher.
A Gut Punch
In June, Dr. Khan ordered a bone marrow biopsy to rule out other blood disorders and cancers before starting specialty medications.
"I think that was kind of a gut punch for me," Blaine said. "Even though he was saying he didn't think it was cancer, it was becoming really real that we were testing for it."
Thankfully, the biopsy results came back negative. The diagnosis of ITP remained.
In early July, they started a specialty medication, but it didn't work. There was no change in Neely's platelet count.
"It's been definitely hard to get disappointment again and again and again," Blaine said.
Finding What Works
In September, Dr. Khan tried a different medication, called avatrombopag, used to treat low blood platelet counts. This time, it worked. Neely’s platelets went up right away and by Sept. 11, his platelets reached 139,000 — nearly the normal range.
Wrestling season was approaching, and Dr. Khan wanted to monitor Neely closely. Blood draws that had been every two weeks became weekly.
"He said, 'You know, wrestling is so intensive. We want to make sure you're not in danger,'" Blaine recalled.
Neely’s platelets dropped during wrestling season, prompting medication adjustments. Now Neely takes two pills daily — the highest dosage of the specialty medication. Last week, his platelets were at 90,000.
"The hope is that this medicine continues to work, and then they gradually wean you off of it and your body goes into recovery," Blaine said.
For now, it's a week-by-week process. Blaine has an app on her phone that alerts her to every blood work result.
Dr. Khan remains positive.
“Generally, younger patients with ITP do better,” he said. “Their chances of recovery and resolution of the ITP are higher and most of them will recover spontaneously with some support."
Living Without Fear
Through it all, Neely has maintained a determined attitude and Dr. Khan has been instrumental in helping Neely stay active and involved in the things he loves.
Now 18, Neely continues to live fully despite weekly blood draws. He isn’t back to wrestling yet but travels with the wrestling team and enjoys being a valued member. Neely also hunts, fishes, and recently took up duck hunting. He's completing his second year of vocational-technical training as a welder and plans to study process technology in college, possibly working in the oil and gas industry like his father.
"Dr. Khan didn't make me feel like I need to live in fear, and I could keep doing what’s important to me," Neely said.
Neely hasn't felt sick since being diagnosed with ITP, but he has a constant awareness that if his platelets drop too low, an injury could be dangerous.
"I'm grateful that he hasn't felt bad," Blaine said. "It's just that fear in the back of your mind when the platelets are low, if he got injured, especially in those first several months where the medicine was not working. Every day I was like, 'OK, God, he's in Your hands.'"
For Blaine, faith has been essential and she believes that God is going to heal Neely.
“I believe we're in the right place with the right doctors and God's got a plan and it's for good for my son,” she said.
Expert Care Without Leaving the State
For a small-town family facing a rare diagnosis, having access to pediatric hematology expertise has made all the difference.
“Oklahoma Children's is the only tertiary children's hospital in the state of Oklahoma that offers advanced care in hematology and oncology, including bone marrow transplant,” Dr. Khan said. “We have comprehensive clinics to take care of children with a variety of complicated hematological diseases."
The nearly two-hour drive to Oklahoma City is a small price to pay for the specialized care Neely receives at Oklahoma Children's.
"Dr. Khan has been absolutely great," Neely said. "He's always really just chill and easygoing about things and he knows how to explain it well."
As Neely approaches the one-year anniversary of his diagnosis this March, his platelets remain stable on medication. The hope is that eventually his body will recover and he can stop the medication altogether.
Until then, he's living proof that an ITP diagnosis doesn't have to mean living in fear.
"Everything seems to be going good," Neely said. "As long as my platelets can just stay up for however long, then I can get off the medicine and hopefully get back to normal."
Pediatric hematology and oncology care at Oklahoma Children’s OU Health is delivered through the Jimmy Everest Center for Cancer and Blood Diseases in Children, where children across Oklahoma receive highly specialized care for rare blood disorders and childhood cancers. As Oklahoma’s only comprehensive center for bleeding and clotting disorders for children and adults — and part of the state’s flagship academic health system — our physicians are leading the research that drives breakthroughs and advances care.
Learn more about Oklahoma Children’s pediatric hematology and oncology care or call (405) 271‑4412 . For comprehensive pediatric services, call (405) 271‑KIDS (5437).
