Wade's silent war
The boy's cancer fight is one for his life
Monday, March 5, 2012
Wade Lengeling sleeps as a machine at Nebraska Medical Center in Omaha scans his body for tumors last month. Daily Times Herald photo by Jared Strong
Wade’s cancer explained
Wade suffers from neuroblastoma, a malignant tumor that grows from nerve tissue, according to the U.S. National Library of Medicine.
It affects infants and children, and its cause is not known.
The disease most often crops up in the abdomen or chest but can form in several areas of the body in the sympathetic nervous system, which controls things like heart rate, blood pressure, digestion and others.
Wade’s cancer had spread to several bones, which commonly happens before doctors diagnose the disease.
Dr. Bhawana Rathore, at the Nebraska Medical Center in Omaha, used the giant machine in the photo (left) to perform a test — what’s known as single-photon emission computerized tomography — to see Wade’s tumor near his left kidney.
OMAHA, Neb. — Wade Lengeling sits on his dad’s lap next to a big circular machine and its circular hum.
Bluish veins crisscross the 3-year-old’s naked scalp and tears stream his cheeks.
He faces a choice: apple or orange juice?
Both will put little Wade to sleep so the doctors at Nebraska Medical Center can see if his cancer has retreated.
“Orange,” he nods.
At this February appointment, it’s been six weeks since Wade’s diagnosis. An oblong, golf-ball sized tumor hugs his left kidney. The cancer spread to bones in his legs, chest and neck.
Wade sips the juice with some coaxing from his dad Nate.
“Small drinks, buddy. Small drinks,” Nate says.
Hospital hallways have become a familiar spot for the Carroll toddler — too familiar for a spunky young boy who greets people with dinosaur roars and hops over cracks in the tile, his soles flashing red with every leap.
Months ago, before Wade complained about scratch-like pains in his legs — before his walk turned to a limp — Wade would run and play with siblings and friends on a day like this.
But so much has changed.
Wade spends his weekdays and weekends at home — sometimes isolated in his bedroom if he has a fever.
His parents split the workweek so that one can always be with him: Nate works weekdays in the Carroll warehouse of Auen Distributing. Wade’s mother Ann works weekends as an emergency room nurse at St. Anthony Regional Hospital.
Wade washes his hands countless times each day. He wears a surgical mask in public.
A simple illness that any other child could easily conquer could kill Wade. A mild fever sends him to the emergency room.
The lights dim in the Omaha hospital room. Mom gently rocks the boy.
Wade, now asleep, slides into the machine that will map his cancer — the first precise images that doctors will use to battle an enemy that no 3-year-old should face.
If all goes to plan, Wade will have two more chemotherapy treatments over the next several months before a surgeon removes the tumor next to Wade’s kidney.
But first, the tumor must shrink.
It was the week before this past Christmas when Wade’s neck ached.
Maybe he had whiplash, Ann thought, after he played rough with his uncle at a family get-together. But the pain persisted, so Wade’s parents took him to see a local doctor.
X-ray tests didn’t reveal anything abnormal, and the family was told to give Wade Tylenol. He probably pulled a muscle, the doctor said.
The pain got worse. By Christmas Eve, Wade had a small fever and started to limp when he walked.
Ann recalled: “He kept saying, ‘It scratches,’ and pointed to his left leg.”
On Christmas morning, the boy awoke early because of the scratches. Nate slept with Wade on a couch until it was time to open presents from Santa.
Ann used a camcorder to record the next moments:
Wade, in short, blond hair and red sleeves, leaned back on his dad’s legs. The Christmas tree and all the family’s presents lay on the other side of the room.
“Can you go play with your stuff, Wade? Can you get over there?” Nate gently urged his son. “Go ahead, buddy.”
Wade shifted — to his right, to his left, to his right.
“You’re OK, big guy,” said Ann.
Wade slowly took the first of 10 uneven steps across the carpet. His older sister Grace, 5, bounced around the room.
“Wade, let me see your dinosaur,” Ann nudged.
Wade stooped over the gift. He bent his knees halfway and braced his hands on his thighs. He paused.
“I can’t ... get it.”
The pains came and went in the next several days. More hospital tests, but no answers.
Then on Friday, five days after Christmas, a St. Anthony doctor felt the lump in Wade’s abdomen. An ultrasound revealed the 3-by-5 centimeter tumor near Wade’s left kidney.
Wade’s parents stayed calm. They went to an Omaha hospital that afternoon for more tests.
Maybe they’ll just remove it, and it’ll be done, Nate hoped.
The next day, a doctor explained what was going on inside Wade’s body. The boy suffers from a nerve cancer that afflicts about 650 children each year in the United States.
The cancer had spread to his femurs, ribs and neck. There was no chance a simple surgery could cure the boy.
Nate asked about his son’s chances for recovery.
“Fifty-fifty,” the doctor replied.
‘It was odd to think that my son has cancer’
The Lengelings went to church the next day at St. Mary’s Parish in Willey, where Ann had prayed since she was a child.
Now, she prayed for her own child.
A church leader asked the congregation to remember those dealing with illness and added “a prayer for Wade Lengeling.”
Word had spread quickly among the tight-knit church community. A family member had told a neighbor about the cancer who told someone at the church.
The words made Wade’s cancer seem so real. Time stood still. Nate later got light-headed and felt as if he might vomit.
But Wade looked up with glee: “They said my name.”
With help, a family trudges forward
Wade got his “tails” two days later. They are two narrow tubes that go under his skin near his ribs and snake up and across his chest.
The first of his seven scheduled chemotherapy treatments through the tubes was in early January. The boy sat as the drugs slowly trickled into his body from a plastic bag.
That a little guy has to go through something like that — it’s not right, Nate thought at the time.
Wade is a bit sluggish after the treatments, and his appetite wanes. His hair fell out in the weeks that followed his first treatments. Wade didn’t seem to care, except when the tufts would drift across his face and into his mouth, his parents said.
For now, the family focuses on cleanliness. Bottles of hand sanitizer litter their house on Carroll’s south side. If Grace coughs, Nate reminds her to cover her mouth. Mom and dad bathe Wade each night. They use a plastic food wrap around his abdomen to keep his tails from getting wet.
They clean the outsides of his tails with a disinfecting wipe and then attach a couple of syringes to the tubes to flush them clean.
Carroll area residents have joined the fight, too. They’ve held several fundraising breakfasts and dinners that have raised thousands of dollars to help the Lengelings.
About 450 people attended one such breakfast of sausage and eggs at the Moose Lodge in Carroll in mid-February. Don Nepple, the lodge’s administrator, said it was a wild success but declined to reveal how much money they had raised through freewill donations.
“It’s easily the most we’ve ever raised before,” he said.
Nate’s insurance has covered most of the cost of Wade’s cancer treatments so far, but the family doesn’t know how much they may have to pay in the months to come. Nate and Ann travel with Wade many times each month to Omaha, which sometimes causes them to miss work.
Wade’s Warriors — a fundraising and support group made of Ann’s friends — have sold nearly 800 t-shirts to raise money and promote the Wade Lengeling Benefit Event, which is set for Saturday at the Carroll Armory.
Lindsay Kastle, who started the group and designed the blue “I’m a Warrior” t-shirt, hopes that 800 will attend the benefit.
“I was just shocked that this could be happening,” she said of Wade’s cancer. But the response from the community has been “amazing so far. I think the benefit is going to be a huge success.”
Moments of normalcy
On Friday, the family celebrated Grace’s fifth birthday with a party at Carroll Bowl. Five friends and their parents came to mark the day.
They gave presents and sang Happy Birthday and ate cake.
Grace wore a paper crown with her name on it. Wade wore a paper mask to keep the germs away. A big tube of sanitizing wipes sat nearby.
Wade traveled with him mom to Omaha that morning for a quick checkup. His most recent chemotherapy treatment was a little more than a week ago, and Ann needed to know that Wade’s immune system was strong enough for a public appearance. Wade takes an injection each night to boost his white blood cells.
The Lengelings don’t usually host birthday parties with friends, but this year is different. This birthday was a milestone of sorts, and it was an opportunity to shift some of the attention Wade has had in the past two months back to his sister.
The kids and parents danced and bowled. And, for some fleeting moments, they forgot about the long battle ahead.
That tumor near Wade’s kidney can shrink and grow between the boy’s chemotherapy treatments. Each cancer case is different, the doctors said.
On a recent return trip to Carroll, Wade’s doctor called Ann to talk about that body scan in February that would reveal whether the chemotherapy was working. They had also checked a sample of his bone marrow for signs of cancer.
The marrow had more cancerous cells than the doctor would have liked, but there was good news: Wade’s cancer battle is moving forward as planned. He’ll go to Omaha for two more chemotherapy treatments in the coming months, after which a surgeon will remove the tumor near his kidney.
The tumor, the doctor said, had shrunk.
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