Surviving was the only option for this 8-year-old after being diagnosed with a life-threatening illness
Cheryl Whitehouse was sure that her 8-year-old son had appendicitis.
She analyzed Casey’s symptoms in her head as she drove him to Providence Hospital: severe pain in the lower right abdomen, nausea and loss of appetite. Surely, she thought, this ordeal would be resolved within a day.
Upon arrival at the hospital, Casey was in such relentless pain that the hospital staff gave him, as Cheryl remembers, enough pain medicine to put down a cow. Something was not right.
The scans of Casey’s abdomen revealed something far more serious than an inflamed appendix – a large mass was blocking his intestines.
There was no pediatric surgeon at Providence, so Casey had to be transferred to a different hospital. An ambulance transported Casey and Cheryl to Cook Children’s Hospital in Fort Worth, where surgery was performed on Casey immediately.
Then Casey emerged from surgery around 3 a.m., nearly 2 feet of his intestines had been removed, leaving him with a 4-inch scar on his abdomen. Casey’s intestines were sent over to pathology as per the routine.
Cancer was the last thing Cheryl expected.
“Never once did it cross my mind. Never in a million years,” she said. “Because, you know, this is my little 8-year-old kid who runs and plays.”
They received the pathology report on Casey’s intestines a few days later.
“You know how when the doctor says, ‘I need to talk to you,’ you know it’s bad?” Cheryl said. But even then, she said she still didn’t have a clue about what was coming.
The mass from Casey’s intestines had come back cancerous. He was diagnosed with Non-Hodgkin lymphoma, which is extremely aggressive and would have to be treated just as aggressively.
The doctor broke the news to Casey. He told the 8-year-old they were going to give him a lot of medicine that would probably make him sick, but in the end, it would get all the bad stuff out of his body. Then Casey would be better and could run and play again.
That night, Casey was moved to the cancer wing of the hospital to begin chemotherapy – a treatment that would, hopefully, kill the rapidly dividing cancer cells ravaging his body.
“I’m sitting there going, ‘This isn’t happening,’” Cheryl said. “It happens to other people, but it doesn’t happen to you. It was horrible.”
Non-Hodgkin lymphoma is a cancer of lymphocytes, cells that are part of the body’s immune system. Because the disease attacks the immune system, patients can become extremely ill, or even die, if they contract something as seemingly harmless as a cold.
Casey said his first day of chemo was torture.
“It was scary having to fall asleep and then people come in and try their best not to wake you up while they draw blood,” Casey said.
He endured chemotherapy six days a week, six hours at a time on some days and an hour and a half on others. After a few days of intensive chemo, Casey received a shot in his leg that would stimulate the growth of healthy cells in his bone marrow; otherwise, the chemo would stunt his bone growth. The majority of the medicine in the shot affected Casey’s body in his rib cage and his back, leaving his body aching as if he had the flu. Then the whole process would start again.
Casey said he remembers being giving heating pads and cooling pads to dull the pain.
“But then when I woke up in the morning, my back or my chest would be on fire, and I would still have pain,” he said.
On top of all his treatment, Casey still had to take a handful of pills by mouth every day, but the tube that was threaded up his nose and down his throat made his throat sore.
“My throat was killing me, so I didn’t want to swallow anything,” he said.
Because it was hurting him to swallow, there were times when Casey wouldn’t drink either, and he became very dehydrated.
He remembers his worst days as the “throwing up” days – when the chemo would make him sick to his stomach.
Cheryl remembers him being very pale. He couldn’t walk – not even to the bathroom.
“When it’s your kid, and you don’t know what to do, it kind of makes you a little crazy because you’re trying to do everything that you can,” she said.
Casey wouldn’t eat, either. Because of the chemo-induced nausea, he was afraid that eating would make him sick. He lost nearly 30 pounds during his treatment, and Cheryl said it took him a while to gain the weight back because he was so reluctant to eat.
There were times when the nurses would try to convince Cheryl to go downstairs and get out of the room for a little while, and she just didn’t want to.
“The nurses were very worried about me because I wouldn’t leave,” she said. “My son’s in the hospital and he’s a little boy – I’m not leaving.”
Her greatest fear was that he would wake up and reach out for her, and she wouldn’t be there.
“I didn’t want Casey to wake up and be by himself . . . how horrifying for a little child to go through that,” she said.
The tube that was threaded up Casey’s nose and caused him so much pain was finally removed after a port and a catheter were implanted into his chest, right below his collarbone.
The port was a round metal disk, roughly the size of a nickel, covered with a rubber seal and connected to a catheter (a small tube) that was inserted into a vein in Casey’s chest. His treatments could then be administered and blood could be drawn directly through the port.
His first meal after the insertion of the port, Casey fondly remembers, was soup.
Casey didn’t start losing his hair until his first round of chemo was finished and he had gone home for a while. He would wake up with hair in his eyes and covering his pillowcase.
He also started to lose his hair in the bathtub. Cheryl said she remembers the time Casey got out of the tub, he exclaimed to her, “Mom, my bathtub looks like a hairy man shaved his back!”
Having his head shaved wasn’t weird for Casey. He was ready for it – anything to keep the hair out of his eyes and off his pillow.
Cheryl says Casey is a “school kid,” and he absolutely loves to read. He spent much of his stay in the hospital perusing the adventures of Harry Potter and Percy Jackson.
The child life specialists in the hospital would bring Casey books for first-or second-graders, which weren’t advanced enough reading material for him. Cheryl says Casey’s oncologist was huge a Harry Potter and a Percy Jackson fan, and once he and Casey connected their shared love of the fictional boy-heroes they had plenty to talk about.
Cheryl was blown away at the way the Robinson and Waco community came together to support Casey. When Casey needed a blood transfusion, Robinson Elementary school counselor Lindsey Richard organized a blood drive at Robinson High School. Almost 200 people came and donated blood on Casey’s behalf.
“We just had kids coming out of the woodwork that wanted to help, especially in his class,” Richard said. “Robinson’s a great community. Our hearts were just open to the situation because it was just so shocking. One day [Casey] was fine, and then the next day he had a severe stomachache and then he was going to the hospital and was diagnosed with cancer.”
Richard and friends of Cheryl’s in Robinson and Waco threw fundraisers to help pay for Casey’s treatment and hospital stay after insurance coverage wouldn’t pay for Casey anymore. They organized a “Candy for Casey” fundraiser that sold lollipops, several classes donated baskets of goods to be sold at an auction, and one grandmother held a garage sale at her home and donated all of the proceeds to Casey’s family.
“You know, it’s amazing how people come together,” she said. “People I don’t even know would send me checks in the mail.”
The day Casey knew it was the final day in the hospital, he says, was the best day of his life.
When his final tests came back, Cheryl says she knew in her heart that everything would be okay.
“When the doctor came in and said Casey’s tests were clear, that everything was gone, we almost started crying,” she said.
After Casey came home, everything about home life changed – they way they cooked, the way they ate, their activities and their schedules.
Casey was still not quite back to normal, even though his treatment had finished; he had no energy and he still was reluctant to eat for fear of making himself sick.
Casey’s hair is still growing back. Before his diagnosis, it was straight, and now it’s growing back curly. He proudly boasts that his curly locks are 4 1/2 inches long, and he has no interest in cutting it, no matter how much his older brother teases that Casey has “girl” hair.
“He’s afraid that once it gets cut, it won’t be curly anymore,” Cheryl said. “At Christmas I said Casey’s gone from a point where he couldn’t grow hair . . . so for the time being, he can wear it as long as he wants to” – a statement Casey has not forgotten. Whenever his mother suggests getting a haircut, Casey is quick to remind her of what she said.
After failing an eye test at school, Casey had to get glasses. His oncologist said this could be a result of the chemo. The round frames he selected remind him of Harry Potter.
Casey rarely talks about his time in the hospital, but certain things trigger his memories.
“When different songs come on the radio, he says, ‘You know what I think of when I hear this song, Mom? Being in the hospital,’” Cheryl said, which usually means he doesn’t want to hear that particular song anymore.
Casey seldom stands still anymore, and who can blame him after spending 300 days in the hospital. He started playing basketball after he regained the energy that the chemotherapy had taken from him, and does sit-ups with his older brother, Trent.
“Before, he didn’t care about sports,” Cheryl said. “He just wanted to read.”
Even with his newfound love for sports, Casey’s still an avid reader. Now that he’s back in school, his counselor, Lindsey Richard says, “I see him with his nose in a book all the time.”
Now that his cancer ordeal is over, he wants to stay fit.
“He says, ‘Mom, I don’t want to get sick again,’” Cheryl said.
For every procedure and treatment Casey endured while he was in the hospital, he would earn “beads of courages” to put on a necklace. By the end of his hospital stay, the necklace reached midway down his chest, laden with beads.
Casey finds his heroes in a boy wizard and a son of Poseidon – characters in Harry Potter and Percy Jackson and the Olympians, two of his favorite book series from his time spent in the hospital. He does realize, however, that he’s somewhat of a hero himself. After all, he says, his own name means “brave.”