Jan 14, 2013 10:10 PM by Connie Tran, KSBY News

Lilly's Story: Local baby girl battles rare form of cancer

Cancer in the first year of life can be rare, but there is one local baby who is not only taking on the battle, baby Lillian "Lilly" Bumpus of Arroyo Grande is only one of a handful of children in the United States with an unusual form of the disease. She has Ewing's Sarcoma, which is cancer that attacks the bone or soft tissue.

"She was just perfect from the moment we met her, just perfect," said Lilly's mother, Trisha Bumpus.

Now, at nearly six months old, Lilly is still perfect, in the eyes of her parents, Trisha and Larry Bumpus.

Trisha said, "I couldn't be prouder."

They say the name Lillian symbolizes strength and courage. Those adjectives, Trisha said, have come into play more so in the last three months of their lives, than ever before. In October 2012, at barely three months old, Trisha and Larry found a small bump on Lilly's chest.

"Sometimes when she was sleeping, she would wake up coughing, like it was kind of affecting her breathing, and it [the tumor] was so big it would rest up on her chin," said Trisha.

These first-time parents hoped for the best, but knew it could be the worst.

Larry said, "you never expect for it to be cancer."

The Bumpus family quickly moved Lilly down to Children's Hospital Los Angeles to find answers and seek treatment. They were hit hard with news that Lilly not only had cancer, but a very rare form of it.

"She has Ewing's Sarcoma of the chest wall," said Doctor David Tishler, pediatric oncologist at CHLA.

Dr. Tishler added, "there are other forms of cancer that are more common, and like I said, this is common in older children and young adults, but in infants, it's quite rare."

It's so rare, in fact, that Dr. Tishler said Lilly is one of the first babies he's ever treated for Ewing's Sarcoma at CHLA. And on top of that, Dr. Tishler believes there are only 6 to 10 other cases reported in medical literature of an infant with Ewing's Sarcoma in the United States.

In October, the tumor on Lilly's chest grew to be the size of a golf ball. She had surgery to remove it, and is now undergoing several rounds of chemotherapy. She is currently on her fourth round. Lilly is also scheduled to have a second surgery in a few weeks to remove any cancer left from the tumor.

But, Dr. Tishler was confident in saying there is a bright future ahead for Lilly. He said the cancer is treatable and curable.

"Children just have a great will to carry on, and to play, and be happy, and that's exactly what she's doing," said Dr. Tishler.

Though the future seems bright, it hasn't been an easy journey for the Bumpus family, said Trisha. They've had to move from their home in Arroyo Grande to the Ronald McDonald House in Los Angeles. The Ronald McDonald House program provides a "home-away-from-home" for families so they can stay close by their hospitalized child at little or no cost.

Trisha said they are blessed to be able to receive cancer treatment at CHLA. The hospital has one of the most comprehensive cancer and blood disease centers in the world.

Trisha and Larry said they've lost thousands of dollars to treatment, and gave up their jobs so they could be with what's most important. Trisha said they rely on donations from family and friends during this difficult period. But she said the community has given them love and support. One restaurant chain is also helping out. On January 25, the Chili's locations in Paso Robles, Arroyo Grande, and Goleta will give 15 percent of proceeds to Lilly, when customers bring in a flyer, which Trisha said will be handed out by family members on site.

"It's so hard, because she's so little, and seeing her in pain is unmeasurable. But she is amazingly strong, and she gives me that look in her eye of 'I got this mom, I got this, it's OK.'" said Trisha.

The Bumpus family said they look forward to the day, which they hope will be in a few months, when they can return back to their home in Arroyo Grande.

To find out how you can help the Bumpus family, click here.

» There are multiple updates to this story. Please click here to get the latest information.



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