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Cancer is now in remission for infant born with rare tumor
Liam Howell had a tumor successfully removed from his back when he was 2 days old. The infant underwent chemotherapy for a rare form of cancer when he was less than 3 weeks old.
Eight-month-old Liam Howell is intent on learning to crawl, and he’s getting all revved up for it.

He’s rolling and bouncing and kicking and doing push-ups, and accompanying himself by making little-boy sound effects with his mouth.

Except for his baldness and slight pallor, you’d never guess that this energetic baby was born with cancer.

To see him appear so normal was far more than anyone could have hoped for when Liam came into the world on Aug. 1. First-time parents Will and Lauren Howell, both teachers at Flowery Branch High School, were shocked at their son’s condition.

"The tumor protruding from his back was about the size of his head when he was born," Lauren Howell said.

Doctors initially hoped that the growth, though huge, was benign. When Liam was just 2 days old, he underwent major surgery to remove the tumor. The pathologist’s report was sobering: Liam had congenital fibrosarcoma, an extremely rare cancer in infants.

"I think one of our doctors said there’s only been about 400 cases ever reported," Howell said.

But that wasn’t even the worst news. When surgeons tried to excise the tumor, they found out it wasn’t simply attached to Liam’s back.

There was another part of it growing inside his abdominal wall.

For Will Howell, this was the most terrifying moment. "They thought that the tumor had metastasized," he said.

If the cancer had already spread to another part of Liam’s body, his odds of survival would be greatly reduced. But it turned out that the inner and outer masses were all part of the same tumor. It had grown through his rib cage and was pressing against his left lung.

There was no way to surgically remove the interior portion.

So the family, and their doctors, placed all their hopes on chemotherapy to shrink the tumor.

Liam was less than 3 weeks old when he began his first round of chemo. While it may seem harsh to inject a newborn baby with powerful chemicals, Lauren Howell said it wasn’t as grueling as they expected.

"We’ve learned that if you’re going to have cancer, (infancy) is the time to do it," she said. "They don’t have as many side effects as the older kids do. And they won’t remember it. They don’t go through the emotional issues."

Family copes with cancer treatment

In some ways, it was tougher on the parents than it was on Liam. They spent much of their time commuting from their Braselton home to Children’s Healthcare of Atlanta at Egleston.

Lauren, a social studies teacher, took a leave of absence to care for Liam full time. Will, who teaches special education, missed a lot of work the first couple of months.

"Will has used up all of his sick days, so now if he takes a day off, he goes without pay," she said.

Lauren has also used up her paid leave. When it became apparent that she would be out for the rest of the school year, she had to go on unpaid leave. Flowery Branch High could no longer use a substitute and had to hire a regular teacher to replace her.

However, another teaching position became available for the 2008-2009 school year, and Lauren was able to renew her contract. She expects to be back on the job in August.

"The school system has been incredibly good to us," she said.

Shortly after Liam was diagnosed last fall, Flowery Branch parents, students and faculty all pitched in for a yard sale at the high school to benefit the Howells.

And since then, the family has received countless prayers and offers of support, sometimes from people they don’t even know.

"I’ve been really humbled at how people have helped out, and I want to thank everyone," said Lauren. "Quite frankly, I don’t know that there’s another community like Hall County. We’ve been so blessed."

Liam suffers a setback

Many people have kept up with Liam’s progress via his blog on Egleston’s CarePages Web site. The journal entries were initially ghost-written by Will, and when he returned to work, Lauren took over most of the writing duties.

For the first two months of Liam’s treatment, the news was good. Chemotherapy was rapidly shrinking the tumor without causing Liam to feel very ill.

But in early October, he began vomiting and his liver felt enlarged. Test showed his liver wasn’t functioning properly. His doctors diagnosed veno-occlusive disease (VOD), a condition in which blood flow to and from the liver is constricted.

It’s a known but rare side effect of actinomycin, one of the drugs Liam was taking. Doctors immediately changed his chemotherapy protocol, but there was no way to fix what was wrong with his liver.

For the first time, the Howells felt overwhelmed with despair. They were appalled that one of the medicines intended to help save their child’s life might now be killing him.

"The VOD was my breaking point," Lauren said. "I was like, ‘I can’t take this.’ You feel so helpless."

But again, luck was with them. Of all the organs in the body, the liver has a unique ability to regenerate. Liam’s liver function tests gradually returned to normal.

Doctors rethink plans for surgery

Meanwhile, CT scans showed that the cancerous mass the family jokingly referred to as "Mr. Tumor" kept getting smaller and smaller. The original plan was to get the tumor down to a manageable size so surgeons could remove it.

But the operation would require cutting through Liam’s ribcage, possibly leaving him with permanent weakness on his left side and loss of function in his left arm.

As time went on, it began to look as if surgery may not be needed at all. The tumor was diminishing so swiftly that it might simply vanish on its own. But the only way to make certain it was gone was to perform a biopsy.

Liam underwent the procedure in February, and when the pathology report came back, his parents were overcome with joy and relief. There were no tumor cells at all, nothing but normal tissue.

But because Liam’s oncologist wants to be make sure that not a single cancer cell remains, he’s now getting two rounds of "cleanup chemo."

"We have to go down to Egleston every Thursday for three more weeks," said Lauren. "Then they’ll do CT scans every three months for two years (to check for recurrence of the tumor)."

It will seem a bit strange not to be making those weekly trips to the hospital, she said. "There are no words to speak highly enough of the care he’s received at Egleston. They love him down there. I think they see him as a success story."

The Howells are acutely aware that not every family of a cancer patient has such a happy outcome.

"There’s been times when children have passed away while we were down there," said Will. "We feel bad because we’ve grown so close to the other families."

Liam’s prognosis looks hopeful

If all goes well, doctors may soon remove Liam’s central line, the tube that’s been surgically inserted into his chest so he can receive chemo. For the first time in the baby’s life, his parents will be able to submerge him in a tub and give him a real bath.

Once Liam’s immune system rebounds from the chemo, the family will also be able to take him to crowded places without worrying about having to shield him from germs.

And his doctors say as long as the cancer stays in remission, there’s no reason Liam can’t have a completely normal life. If he wants to play sports, they say, it shouldn’t be a problem. That’s great news for the Howells, who dressed their son in a Georgia Bulldogs outfit almost as soon as he was born.

But because chemo can cause genetic mutations, Liam is at a somewhat higher risk for developing another type of cancer later on. "We’ll have to monitor him for long-term effects," said Lauren, noting that it will be difficult for her not to treat him as if he’s fragile.

"I will worry for the rest of his life," she said. "But I don’t want him to be afraid."

There seems little chance of that right now. Liam is utterly fearless, constantly in motion and eager to explore his world. Amazingly, neither the cancer nor the treatment have inhibited his physical development.

"He’s such a boy," Lauren said, smiling.

Someday, they’ll sit down with Liam and tell him about his extraordinary first year, and explain how he got that long scar on his back.

For Liam, it may seem like no big deal. But for his mom and dad, it’s been a life-changing experience.

"I think I’m a stronger person now," said Lauren. "And I’m much more aware of our connection to the community. I had no clue that even strangers would reach out to us the way they have."

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