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Margate boy with rare cancer not sour about life

Alex Anderson, of Margate, has a rare cancer called Von Hippel-Lindau, a genetic disorder that affects about one in every 32,000 people. But instead of feeling sorry for himself, he spent Saturday raising money to help other children in similar situations.

The event was called Alex's Alex's Lemonade Stand, part of a nationwide effort started by Alexandra Scott, a Pennsylvania girl who died of cancer at the age of 8. She started the drink sales to raise money to “help my doctors find a cure,” and the effort continued after her death.

“We're selling lemonade hand over fist,” said his mother, Karen Anderson. “The donations are outrageous.”

Even before the first cup of lemonade was poured, Alex Anderson raised $4,000 for the cause. He hoped to raise another $1,000 Saturday.

“Kids can come in and give pennies and dimes to get lemonade,” and adults can give more, Alex said before the event. “We've gotten a $500 donation from someone we never met.”

The money raised this weekend will go to Alex's Lemonade Stand, Anderson said. She will request that the money be allocated to VHL research.

Alex himself has been selling lemonade for charity for several years. He raised about $800 for the Donny Fund Field of Dreams, and last year collected $125 for victims of the tsunami in Asia, Anderson said.

For most who stopped by Saturday, it was all about fun.

Keanna Voso, 14, of Margate came to drink lemonade “and support Alex because he's a cool kid,” she said.

“It's good lemonade,” said her friend, Kayla Sabo, 14, of Margate.

Alex's story

But it's been a tough road for Alex.

The saga started when Alex was 4, and lying on his parents' bed on his left side, Karen Anderson said.

“Every time I spoke to him, he picked his head up and said ‘Huh?'” Anderson said. “He pointed to his left ear and said matter-of-factly, ‘This is the ear I hear out of.' It didn't occur to him that he didn't hear out of his right ear.”

They took him to a pediatrician, who said Alex probably had fluid in his ear, Anderson said. It would take six to eight weeks to get an appointment with a specialist at Children's Hospital of Philadelphia, or CHOP. But a week later, Alex developed a fever of 105 degrees, and they took him the next day.

In Philadelphia, the doctors suggested removing Alex's tonsils and adenoids, Anderson said. In the car on the way home, he fell asleep with his right eye open, and two days later, the right side of his face was paralyzed.

She called the pediatrician, who told her to pack a bag and head back to CHOP, Anderson said. A CAT scan found a mass behind his right ear, and the doctor had no idea what it was.

“(The doctor) was up all night on the computer,” Karen Anderson said. “It was something they had never seen before.”

In the morning, the doctor came back with the diagnosis of VHL, Anderson said. The tumor behind the ear is the rarest form, and it had almost never been seen in someone younger than 15. There was no protocol for treating children with the syndrome.

It took a medical team of more than 20 people 14 hours to remove Alex's tumor, Anderson said. He spent five days in the pediatric intensive care unit.

That was followed by frequent MRIs and trips to Johns Hopkins Hospital in Baltimore. Along the way, Anderson said she had to teach the doctors about VHL, because they had never treated it. Finally, they found Dr. Wendy Chung at New York Presbyterian Hospital, who is a specialist on children with the syndrome.

But it wasn't over. Alex said he had surgery in December to remove 11 tumors, most of them microscopic, from his eyes.

Now he needs a full-body MRI every two years, regular blood and urine tests, and ear and eye exams every few months, Anderson said.

His prognosis is good, but he has to be monitored constantly.

“That's the part I don't like,” Alex said. It's “a little too much for comfort, but at least I'm alive.”

Counting their blessings

With so many childhood cancers being fatal and untreatable, the family is happy that Alex's case is manageable and he can lead a fairly normal life, Anderson said.

“There are so many things in this world that are beyond our control,” she said. “What we can do is reach out and help others.”

The lemonade sales are a family project, and 7-year-old Amy enthusiastically pitches in, Anderson said.

Anderson said her experience leads her to tell parents to watch their children carefully.

“If you feel in your gut that something isn't right, you need to act on it,” she said.

And Alex's upbeat outlook can serve as an example to many.

“The reason I have such a positive attitude is you've only got one life to live through, and you may as well make it happy,” Alex said.

The Anderson's will run another lemonade stand from 8 a.m. to noon today at the Donny's Fund Day at the Pleasantville Yacht Club.
To donate, log on to www.firstgiving.com/AlexAnderson. For more information about Von Hippel-Lindau, log on to www.vhl.org.


To e-mail Elaine Rose at The Press: ERose@pressofac.com

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