Dr. Bradley George points to the tumor on an earlier MRI of Brandon Connor at Children's Healthcare of Atlanta at Scottish Rite. There was no sign of the tumor in an MRI on Monday.JOHN AMIS / Special
Posted on 11/13/2003 2:30:52 AM PST by Cincinatus' Wife
Brandon Connor started out life dramatically.
The 2-year-old was born with a tumor on his spine, two days after Sept. 11, 2001.
The tumor, a vicious, aggressive cancer known as neuroblastoma, had nerves running through it.
To surgically excise it would risk paralysis. To leave it would risk death.
Dr. Bradley George points to the tumor on an earlier MRI of Brandon Connor at Children's Healthcare of Atlanta at Scottish Rite. There was no sign of the tumor in an MRI on Monday.JOHN AMIS / Special
Doctors told his parents, Kristin and Mike Connor of Peachtree Corners, to wait. Surgery so near the spine is too risky, they said. We'll watch the tumor to see how it grows. We'll scan it and ultrasound it.
And so, for more than two years, the Connors waited, worrying that the tumor would spread and blast their son's small body with its deadly cells.
They waited and worried through every cold, every fever, every stomach cramp. They waited through every scan, every MRI, every needle stuck into his arm to put him to sleep for every test.
They waited until they could wait no more, in August, when Brandon was sick for three weeks with a mysterious fever and abdominal pains. The Connors feared their time was up.
They scheduled the highly risky surgery this week in San Francisco, with a world-renowned neurosurgeon.
On Monday, one more test stood between Brandon and the surgery: an MRI of Brandon's spine. But when the doctors looked at the MRI on Monday evening, they could not believe what they saw.
The tumor was gone.
"I just can't tell you how we felt," said Kristin. "Here it was, the 12th hour, they said this couldn't happen. It's just a miracle."
"It's very, very unusual," said Dr. Katherine Matthay, head of pediatric oncology at the University of California at San Francisco, a neuroblastoma expert and one of Brandon's doctors. She said she is certain the tumor is gone, and chances are good it will not return.
Kristin, 34, Mike, 37, and their other son, Ryan, 5, had been living with the tumor since before Brandon was born.
Doctors spotted it on an ultrasound when Kristin was 8 months pregnant with Brandon. She had been sick throughout her pregnancy.
"It had been such a long road, I couldn't believe there could possibly be something wrong with him," she said. "We were just devastated."
They didn't know for sure what it was until Brandon was 5 weeks old. Doctors diagnosed it as neuroblastoma, one of the most aggressive childhood cancers. It originates in neural cells and often is located near the adrenal glands toward the small of the back.
"It's a very vicious tumor," said Matthay, who directs the national cooperative trials for the Children's Oncology Group. About 700 children each year are diagnosed with neuroblastoma. For children who are not diagnosed until the disease has reached other organs, the two-year survival rate is less than 40 percent.
In Brandon's case, some doctors suggested a biopsy shortly after the diagnosis, but others said the surgery would be too dangerous in a baby so young.
Brandon was hospitalized with a virus soon afterward, and the question of whether to operate became moot.
Because some neuroblastomas spontaneously regress before a child turns 1, doctors suggested regular MRIs to monitor the tumor.
Watching and waiting
As Brandon's first birthday approached, the family was filled more with apprehension than with joy. Brandon had occasional bugs and stomachaches, which could be symptoms of the cancer, and the tumor remained.
Perhaps the hardest part, the Connors said, was not knowing what to do.
"Doctors said, 'You could talk me into surgery, or you could talk me out of it,' " Kristin said.
The Connors also struggled with what to tell Ryan.
"There are times when he says, 'Why did God give Brandon cancer?' and I don't know what to say," their mother said. "But I do tell him that when God was trying to decide what family to give Brandon to, he searched and searched for the perfect big brother and picked you."
The Connors began a desperate search for answers about the little-known cancer. Their seeking led them to Boston, then across the country to California and Matthay.
The oncologist consulted with a colleague, world-renowned neurosurgeon Dr. Nalin Gupta, who told the Connors he thought he could excise the tumor without paralyzing Brandon. Still, the parents were not sure what to do.
In August, with the tumor still evident, they had the scare of their lives.
"He started running a fever," Kristin said. "At first it was 99, then 103. He stood up in the bathtub and cried for 45 minutes, 'Mommy, hurt, hurt!' The doctors thought it was full blown. It was the most terrifying experience of my life."
They scheduled surgery for Wednesday in San Francisco.
Ryan would stay behind with grandparents Jack and Judy Rigby. The day after Halloween, Kristin took Ryan to a playground and broke the news that his parents and brother would be gone for a while.
"I said, "Ryan, do you understand why Mommy and Daddy have to go?' And he said, 'Yes, Mommy, so Brandon won't die.' "
Fear in California
Mike traveled last week to San Francisco to meet with doctors and arrange details. Kristin and Brandon left on Sunday.
Once in San Francisco, the fear caught up with Kristin when she and Brandon checked into a home for children with cancer.
She wrote in her journal: "It's a wonderful place, and it provides much needed help to many. But to me, it felt sad and scary and totally depressing. I kept thinking about the moments I'll need to 'escape' from the hospital, and I realized that it won't be an 'escape' for me at all. It's just total immersion into the world of serious childhood illness, which breaks my heart."
She could not stop crying, she wrote, and her husband decided to move the family to a hotel that had offered them a special rate. Then they waited for Monday's MRI.
The procedure went fine. As the Connors were meeting later in the day with the hospital staff about insurance and payments, they were interrupted. The doctors needed to speak with them.
"He [Gupta] asked, 'Do you want the bad news or the good news first?' and I of course said the good news," Kristin Conner said. "He said the good news is that the tumor went away. The bad news is that you came all the way to San Francisco for an MRI."
'The best news'
It's a happier reunion than their family imagined as Brandon Connor, 2, kisses big brother Ryan at Hartsfield-Jackson Airport; grandmother Judy Rigby enjoys the scene. Doctors learned Monday that Brandon's cancer had disappeared. Joey Ivansco/staff
Brandon's local physician, Dr. Bradley George of Children's Healthcare of Atlanta at Scottish Rite, was shocked when he heard the news.
"Brandon's the only little guy with a peri-spinal mass that we've ever had that went away," George said. "This is the best news we could have possibly hoped for."
Matthay said it is possible that Brandon never had neuroblastoma, that the mass could have been other tissue that mysteriously went away.
But George said he was confident Brandon did have the cancer because of the way the tumor acted and its location.
Brandon's case also illustrates just how little doctors know about neuroblastoma. Because it is so rare, it does not attract the research dollars many other cancers do, doctors said.
"We have not made the same progress with neuroblastoma that we have with other childhood cancers," George said. "We're frustrated. We don't know for sure how to treat it."
In October, the Connors joined with other families across the country to raise money for neuroblastoma research, calling their campaign Lunch for Life. They raised $100,000.
The Connors vowed to continue their fund-raising efforts, even before they returned to Georgia.
Their flight home Tuesday arrived 43 minutes early. Waiting for them were Ryan, with a Beanie Baby for his little brother, and his grandparents.
As Kristin, Mike and Brandon came off the escalators at the airport, Ryan ran straight for his little brother and hugged him tight.
A stubbly faced Mike watched his sons, the smile of a proud parent crossing his face and tears of relief welling in his eyes.
"You don't want to ask why," he said. "You just take the gift and pass it on."
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God is good
Thanks for posting this Cincinatus' Wife.
The COG (Children's Oncology Group even has a newly activated study protocol which involves observation of newborn neurobalstomas with intervention only upon signs of progression, as most of these will eventually resolve spontaneously.
I needed happy news this AM. and you've provided it!
There are still miracles!
I still read the Dad's diary every few days to follow Sydney's progress. They truly are an amazing family. And I was overjoyed to hear that there appeared to be no trace of her cancer after the operation. Still a long way to go, but they're in my prayers!
Here's a link to another thread detailing Sydney's battle and the "Lunch for Life" effort.
This tumor was apparently the size of a grapefruit. She is a tough old lady, fearless of life but fears God. Darn thing disappeared within a few months, no treatment or anything.
Which is why I would suggest the healing is more providential than miraculous. God should be praised, nonetheless.
sw
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