Spencer's battle
By Kenneth Fine
Published in News on May 25, 2008 2:01 AM
DURHAM — Somewhere inside the Duke Hospital Intensive Care Unit, Spencer Rollins is fighting — his parents lost in prayer at his bedside.
But the young family is not supposed to be there.
Doctors were preparing the 2-year-old’s discharge a few weeks ago, but something went wrong after Spencer’s surgery.
So instead of learning the alphabet with his mother, Katie, he is fighting off an infection in his lungs.
Instead of making his father, Andy, laugh, he relies on a ventilator to breathe.
The tube down his throat makes it impossible for him to flash the smile his parents say lights up a room.
He can’t tell them he loves them, or demonstrate to the medical staff just how polite he is growing up to be.
A few months ago, you would have never known Spencer was sick — that he had been in and out of hospitals since he was 3 days old.
Or that his parents once thought he might die shortly after his birth, that he has endured five open-heart surgeries.
This one was supposed to be the last.
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Andy and Katie were getting anxious.
May 5 was approaching, the day that was to mark the end of a string of open-heart surgeries Spencer had endured since he was 8 days old.
The Rollins family moved to Goldsboro last summer, in part, because of its proximity to Duke University — and because Andy flies F-15E Strike Eagles for the Air Force and a fleet is housed at Seymour Johnson Air Force Base.
On May 4, they headed for Durham.
Spencer’s operation was the next day.
But something happened after the surgery that added to the adversity the Rollins family has met since his birth.
One of his heart valves failed.
Doctors had to perform an emergency operation.
“To have surgery and then emergency surgery two days later, it’s just wreaked havoc on his body,” Andy said.
“His kidneys shut down. He had liver issues but they are getting better,”
Katie added. “I guess the big thing now is his lungs. He is still on the ventilator. He’s been on the ventilator for two-and-a-half weeks. Now we’re fighting an infection.”
More hard news surfaced with an MRI.
“He suffered brain damage as well,” Andy said. “(The MRI) showed that there is a significant portion of the left side of his brain that is damaged.”
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Spencer was born in Idaho in late 2005, while Andy was stationed at Mountain Home Air Base.
The day his parents took him home from the hospital was special.
He appeared to be a happy, healthy little boy.
But a few days later, Katie noticed something with his breathing. “It was kind of a rollercoaster,” Andy said. “I mean, three days before …
you have just brought your first child into the world and it’s awesome. But now, we know something’s wrong. We just don’t know to what extent.” They took him to the hospital where, at first, doctors assured them they were being “paranoid new parents.”
But then, they couldn’t get a reading of Spencer’s pulse.
A crowd of doctors and nurses rushed to his side and told Andy and Katie to wait in the hall.
“We were initially thinking it was a body infection,” Andy said. “We kept saying, ‘You know, we know kids who had Spinal Meningitis as a kid and they grew up to be fine. We’re going to get through this.’ But obviously, it’s a crushing blow to know your kid is sick.”
And then, another crushing blow, the diagnosis.
“When (the doctor) said, ‘This is what a normal kid’s heart looks like.
This is what Spencer’s heart looks like.’ Right then we knew our world was going to change,” Andy said.
Still, they had no idea what they were in store for —
that they would almost lose their newborn, that it would take a few days for doctors to clear him for surgery.
Jan. 1, 2006, a medical team gave Spencer the OK.
He was to have three surgeries, meant to modify the half a heart he was born with.
“Changing the plumbing around, that’s the best way to describe what they were doing,” Andy said.
Spencer was only 8 days old the first time a doctor opened his chest. Then, just six months later, he went through it again.
“That one went really well,” Andy said.
Until two days after when a valve in his heart ruptured and he underwent emergency surgery.
“That one really beat him up,” Andy said. “It knocked him down.”
But Spencer recovered, and over the next two years learned to walk, and talk, and how to send Katie into “hysterical laughter.”
“You would never know he was sick. He talks. He’s hilariously funny. He’s super-smart. He knows his alphabet. He loves to read,” Katie said. “And he’s fat and chubby, not like most sick kids.”
“You know, it was like if you looked at him long enough, you almost forget he was sick,” Andy added. “But then you bring him in for a checkup at the hospital, you see kids that you know are sick — struggling with cancer and things like that — it puts it all back into perspective. You remember that your kid is that sick.”
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Back in the ICU, Andy and Katie find little time to sleep.
They only leave Spencer’s side when the doctors insist — trying to stimulate movement with light rubs and kisses.
“The left side of his brain, where he has taken some damage, is the sensory and motor portion, which would affect the right side of the body. Well, so far, we have seen him move all of his limbs, in unison even, with deliberate motion,” Andy said. “We have also seen motion on both sides of his face. He will react to your touch on the right side of his body. All those things look pretty good.”
They know he is a fighter.
“I get strength just looking at him. I mean, he doesn’t know any different. As far as he knows, every kid has to go through this before they are 3 years old. He just deals with it, but yeah, he is suffering,” Andy said. “It’s tough knowing that he’s suffering, suffering in a way I have never had to suffer.”
n
Andy should be in an
F-15E, training the next
generation of fighter pilots with his comrades in the 4th Fighter Wing’s 333rd Fighter Squadron. Katie should be focusing on her second child — due only seven weeks from now.
But they just can’t bear to leave Spencer’s side.
Not while he is fighting.
Still, it’s hard.
“I think what is most difficult for Katie and I is that we can’t do anything for him.
If I could, I would cut my heart open and give it to him. I would give him anything he needs — a new kidney, a new brain, whatever,” Andy said. “But they won’t fit. So all I can do is sit here and watch.”
Watch and pray — that his son will grow to be a man, that Spencer’s brain will learn to function normally one day.
Katie, too, relies on her faith to make it through the hard days. “We take it as God chose us. He thought we could handle Spencer,” she said. “Sometimes I don’t think so, but you know, we do feel like ‘OK. If God thinks we can do it, here we go.’”
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Inside the 333rd’s main building on Seymour Johnson, a card from Andy and Katie is posted on a lobby wall.
It is a ‘thank you’ note — “For everything.”
You see, the Rollins family had been suffering in more than one way.
Spencer’s illness was taking its toll, and financial woes were starting to add up, too.
There was the cost of gasoline for the 100-mile trips from the base to the hospital.
Add hotel fees, food and incidentals.
And none of them were
covered.
The Rollins family doesn’t qualify for assistance under TRICARE because they live too close to Duke Hospital.
Members of Andy’s squadron already knew his story. They were already behind their comrade.
But when they heard about the complications after Spencer’s surgery, and that money was tight, they took action.
Capt. Tapan Sen said they didn’t think twice.
“I think just about everybody in the squadron has kids. A lot of us say we wouldn’t be able to handle it,” he said. “I have an 8-month-old daughter, so I think about it. ‘What would it be like if it were her instead of Spencer?’”
So he and other members of the unit took up a
collection.
“We figure they are spending about $1,000 a week,” Sen said. “We wanted to ease that burden as much as possible.”
They raised $800.
But something bigger was happening.
Spencer’s story spread, and as it did, everyone who heard of the boy’s strength and courage wanted to help.
4th Fighter Wing Vice Commander Col. Dan DeBree has a house in Durham, only a few minutes from the hospital.
So when he heard about the Rollins’ troubles, he offered them his house. 333rd Commander Col. Jeannie Leavitt and one of the squadron’s key spouses drove up a few days ago with a car full of food — some homemade dishes and enough snacks to fill the pantry.
“It’s almost overwhelming to see the generosity of this squadron,” she said. “It’s got to be hard, day after day, that helplessness they must feel.”
But Spencer’s story did not stop there.
In fact, it broke right through the Seymour Johnson gate.
And Seymour Support Council Chairman Troy Pate was there to hear it. He started reading a blog Andy has been writing since Spencer got sick. “It’s just heart-wrenching stuff, what this young couple is going through,” he said. “We need to do something to help.”
So along with the 333rd and other community leaders, they set up a foundation in Spencer’s name.
Pate’s hope is that Golds-boro and Wayne County residents will be inspired by the 2-year-old’s story, that those with the means to help the Rollins family will.
It’s a chance to renew the “legendary” relationship between Seymour Johnson and those towns outside the gate, he said.
“What a great opportunity for this community to show, again, that it will wrap its arms around our young airmen when there’s a real need,” he said.
And for the next several weeks, the need will grow greater.
The truth is, Andy and Katie have no idea how long Spencer will be in the ICU.
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Katie would tell you that Spencer is only partly hers, that he has been “adopted” by nearly everyone he comes into contact with.
“You know, this whole thing made us realize that Spencer isn’t really ours,” she said.
“Yeah, we get to take care of him. He lives in our house. But it’s so unique how many total strangers love him.
How they would do anything for him. He is just a light in our life, and to see that he has been a light for people he has never even met, it’s just awesome.” Andy thinks he was sent by God as a symbol of His grace.
So they will continue to pray that he pulls through — that he will lead a normal life, that his brain will recover from two-and-a-half years of trauma.
And in the meantime, they will treasure every chance to stare into his eyes, every moment with their little boy.
“Really, we just take it one day at a time. Who can tell what tomorrow will bring?
You just focus on today, seize the day,” Andy said. “You know, it’s not fun to go through, but we always tell our brothers and sisters about our niece and nephews, ‘We always take our own breath, our own heartbeat for granted. Well, when you’re blessed with a kid like Spencer, and you spend the first three months of his life just watching the heartbeats, listening to the heartbeats … you gain an entirely different perspective, an appreciation for life I don’t think I would have gotten if we didn’t have him.”
And without Spencer, they might never have known just how much love can radiate off an air base.
“You know, as a fighter pilot, it’s kind of engrained in you, ‘I got this. I can handle it. Give me a problem, I’ll fix it,’” Andy said. “In this situation, there’s nothing I can do. That’s humbling in itself, but it’s also humbling to have all these other people shower you with help. You know that you have their support and it means so much.”