Photo by Louise Red Corn/Bigheart Times
The Kanke family’s emotional roller coaster hit an all-time low early Tuesday afternoon, when doctors delivered the devastating news that the tumor removed from their four-year-old son’s neck was a neuroblastoma: Cancer.
The news left David “Lil D” Kanke’s mom in tears, uncertain about the happy little fellow’s future since the diagnosis was so fresh.
“It’s OK to cry, and that’s all I’ve been doing,” she said.”They think they got it all. But he’s not doing very well today.”
On Thursday, Lil D had surgery and while the wait was agonizing as he spent five hours in the operating room, everything seemed so much brighter.
Robert and Kelly Kanke waited as the hands on a large clock in the third floor waiting room at OU Children’s Hospital seemed at a standstill. They passed the time by talking about upcoming events in Boy Scout Troop 33, which he helps lead. After about two hours of waiting, Kelly upped and went upstairs to visit Dylan Tattershall, a baby from Ponca City whose top weight was the 7 pound, 9 ounces he weighed when he was born right before Thanksgiving.
“I just can’t sit here. It’s making me too nervous,” Kelly said, pushing the elevator button en route to seeing the ailing baby boy, a tiny thing with skinny arms and legs and a thicket of black hair.
For five solid hours, four-year-old David “Lil D” Curry Kanke was in surgery to remove the complex tumor, a glob the size of a duck egg that attached itself to his facial nerves and vocal cord, intertwined with his carotid artery, and was clamping down on his trachea, causing him to stop breathing frequently.
Kelly, being mom, pushed for information during the surgery. She had a volunteer call back to the operating room, but that yielded little information other than the fact that surgery was continuing.
She then distracted herself from the wait by writing a poem, which in part read:
“Your smile is always ready
Your laughs just melts my heart
And even though you can’t see me
We’re never far apart.
“I love you to the moon and back
And with all the grains of sand
I love you so much little man
I’ve always got your hand.”
At 4:25 p.m., Dr. Jesus Medina, a head and neck cancer specialist brought in to help with the operation, appeared in the hallway. Kelly jumped up. In a soft voice, Medina tells her and other family members that the surgery has gone well: The tumor has been freed, removed and sent to pathology, but doesn’t look malignant. And all of the dangerous pitfalls doctors had feared they would face have been avoided: They didn’t have to cut any nerves or Lil D’s carotid artery, both of which could have left him with permanent damage.
The chief surgeon, Paul Digoy, is suturing Lil D back up in the operating room, and should be out soon, Medina added with a kindly but weary smile.
At 5, Digoy comes out of surgery. He tells the family that in surgery, he did have to cut part of the sympathetic nerve chain near Lil D’s eye. That, he says, could cause Lil D to have a dilated pupil and a droopy eyelid, but both should be reparable later.
“That’s a minor detail, considering what you’ve just done,” replies a thankful Kelly.
“How many children have these tumors?” Digoy says rhetorically. “It is so uncommon.”
Uncommon, but neuroblastomas, malignant tumors that arise out of nerve tissue, are almost exclusively found in small children, those under 5 years old. About one in 100,000 children suffers from neuroblastoma, according to the National Institutes for Health. Prognosis varies. Sometimes, they go away by themselves. Sometimes, they mature and turn into a non-malignant tumor called a ganglioneuroma. Sometimes, they spread.
The Thursday news, albeit proved mistaken on Tuesday, set mom, dad and two grandmas to calling relatives, a flurry of excited talk after hours of stressful silence and small talk.
“It’s all fixed,” Kelly said over her cell phone. “It’s all good. They didn’t have to cut any nerves or anything. Just keep praying. I love you guys.
“I doubt he’ll be able to talk tonight. I love you.”
Kelly stopped her barrage of phone calls to make a comment, to thank all of the people in Osage County and beyond who prayed for this little boy, whom she adopted after his biological mother – whom she had also adopted – died in 2010. “All the prayers – all the prayers helped,” she said.
In recovery, Lil D was barely coming out of anesthesia at 5:30 p.m. He opened his eyes a little, smiled, then drifted back off to sleep.
“I just want to hold him now,” Kelly said. “It’s like a newborn baby. I want to count his fingers and toes.”
On the foot of Lil D’s gurney lay a stuffed muslin doll with a makeshift heart monitor attached to its chest and a cut on its neck, taped back together. Doctors gave it to Lil D before he went into surgery, to show him what he’d look like when he came back out.
As he was going in, Lil D was crying, scared. Grandma Evelyn asked him if the doll was his “little bear.”
“No,” Lil D replied. “It’s me.”
“So that’s what you’re going to look like when you get out?” she asked.
“Yes, but I’ll still have my smile,” he answered.
And he does.
It might just be enough to whip cancer.
