Desmoplastic Small Round Cell Tumor (DSRCT)

Tuesday, March 2, 2004

Family sacrifices all for child. Parents leave China, prosperity to treat girl's rare cancer.

By GREG HARDESTY
The Orange County Register

Every day when Ping and Lailing Chen talk to their gravely ill daughter in the hospital, they try to stay upbeat. "Don't give up hope,'' Lailing tells Mon Mon, 15, who cannot talk back. "We will stay with you forever,'' Ping Chen tells his only child. "We have found you the best hospital in the world.''

The Chens' story is one of parental sacrifice – and undying hope. Their search for a hospital took six months, uprooting the couple from a once-prosperous life in the modern south China city of Guangzhou 7,200 miles to UCI Medical Center in Orange, where they are living off rapidly dwindling borrowings and sleeping on a roll-away bed. They have given up their business and their house, even sold their jewelry, all in a desperate effort to keep their daughter alive.

As Mon Mon battles an extremely rare and highly malignant cancer, her mother and father rarely leave her.

WHAT AILS HER
Mon Mon Chen, 15, suffers from an extremely rare and highly aggressive cancer that originates in connective tissue in the abdomen and mostly attacks children and young adults, typically males. Desmoplastic small round-cell cancer is a sarcoma and is related to the Ewing's family of tumors. There have been only about 100 recorded cases worldwide, said Dr. Stanley Calderwood, a pediatric oncologist at UCI Medical Center in Orange. The cause is unknown. No environmental or familial risk factors have been identified. Overall prognosis for recovery is poor, with less than 20 percent of patients surviving.
HOW TO HELP
A fund to help the Chen family has been set up through Washington Mutual. Money can be donated at any branch into account number 0941860802. Or call family friend Marcia McCluer at (888) 801-1414.

There have been only about 100 such cases of desmoplastic small round-cell cancer worldwide, said Dr. Stanley Calderwood, Mon Mon's physician. The cancer attacked the connective tissue in her abdomen last August and spread to the lining of her right lung. Her belly swelled to the size of a pregnant woman's. Although chemotherapy has zapped the growth in her abdomen from the size of a football to a tennis ball, her right lung remains completely encased in a tumor. She has a 30 percent to 40 percent chance of survival, Calderwood says.

The Chens, once upper-middle-class entrepreneurs with house servants, don't care about the luggage manufacturing business they lost after Mon Mon got sick. They don't care about losing their home to bankruptcy and having to sell two cars after being caught uninsured. "There's only one thing I care about,'' Ping Chen, 45, said. "Saving my daughter.''

Last week, after coming perilously close to dying, Mon Mon began a second round of chemotherapy. "She's incredibly strong- willed and determined,'' Calderwood, a pediatric oncologist, said. "That's definitely going to work in her favor.''

Already more than $500,000, Mon Mon's medical expenses should top $1 million in about a month, Calderwood said. In her semi-private hospital room, Lailing, 42, gently wipes sweat from the cheeks of her daughter, who can communicate only in writing. She recently had a tracheotomy and needs a ventilator to breathe.

Sometimes Mon Mon writes in Chinese, sometimes English - which she has studied for three years. Could you ask my mom come here, one note reads. Another: Today morning who look at me?

Mon Mon can't take fluids through her mouth. She gestures to her mom to hold up some orange juice, just so she can see it. She is not shy. When Mon Mon wanted a nurse to leave her alone, she wrote on her pink pad, "Bye.''

Mon Mon has lost more than 20 pounds since falling ill. Her parents never cry in front of her.

Trying everything

The Chens met in a department store and married in 1987. Mon Mon was born the following year on Aug. 4. She's always been a good student. She blossomed into a 5-foot-4, 143-pound basketball player for her school. She loves to sing.

For her birthday last year, Mon Mon's mother promised to take her shopping for clothes. But work interfered. Lailing ran the factory at her husband's luggage business, and the recent death of her brother, a company partner, had been keeping her extra busy. "I want to die!'' Mon Mon fumed at her mother. A week later, doctors found something wrong with Mon Mon's right lung. Tuberculosis, they thought.

Shaken, the Chens tried everything. They consulted the best specialists in Guangzhou. They made trips to Hong Kong to buy expensive medicine. They tried traditional Chinese herbal remedies. They hired someone to rid their house of evil spirits. Nothing worked. In October, doctors changed their diagnosis to cancer. They told the Chens that they had never seen such a rare and aggressive form of the disease and that they did not know how to treat it. Go to the United States, doctors advised.

Admitted to UCI

So the Chens went. Two longtime friends, Helen and Robert Novak of Newport Beach, put them up for several days when they arrived Jan. 15. Two Los Angeles-area hospitals rejected Mon Mon as a patient, but UCI Medical Center admitted her Jan. 23. Uninsured, the Chens promised to pay what they could.

Mon Mon was near death when she was admitted and immediately was put on life support.

The Chens moved into the Ronald McDonald House, a place in Orange for families of children undergoing treatment for cancer and other serious illnesses. The couple is now staying in Mon Mon's room, waiting to see if they can extend their one-month stay at the home.

Ping Chen would love to start working. He, Lailing and Mon Mon are in the country on visitor visas.

Every night, Ping Chen calls his parents in China to tell them how Mon Mon is doing. "If I don't call them, they just sit in chairs and wait, unable to sleep,'' Ping Chen said.

Last week, Marcia McCluer, who lives next door to the Novaks, brought Mon Mon a laptop. Moving only her eyes and hands, Mon Mon starting tapping away. She played a pinball game. She listened to a Foo Fighters CD.

Mon Mon has started writing letters to friends back home. Someday, she hopes to see them again.

Mon Mon with her mother and father. Before diagnosis.

http://www2.ocregister.com/ocrweb/ocr/article.do?id=83607

The Orange County Register
April 22, 2004

Teen takes steps away from death's door Author: GREG HARDESTY

A half-eaten Snickers bar on a desk. A Christina Aguilera DVD atop a stack of videos. Stuffed animals. Over the past three months, a hospital room in Orange has vividly come to life with the trappings of a teenage girl -- a transformation that has startled nurses and doctors who never expected her to live.

On Wednesday, in a constant stream of embraces, they all came to say goodbye to Mon Mon Chen, 15, whose recovery from an extremely rare and malignant cancer at UCI Medical Center has been hailed ``miraculous'' by her doctor.

The Chen family is from China but will not be going far. A family friend in Newport Beach is taking them in as they pursue a new life, despite huge financial obstacles. Mon Mon's discharge was a happy moment for her and her family and for staffers on the pediatrics ward who routinely deal in heartbreak. ``Today, she will leave with us from the hospital to enjoy springtime and again smell the flowers of life,'' Mon Mon's father, Ping Chen, 45, wrote in a thank-you note he painstakingly translated into English from his native Mandarin. ``What, are you trying to make us cry?'' nurse Wendi Watkins said as the Chens presented her and staff members with the note and a basket of goodies.

Mon Mon's recovery from desmoplastic small round-cell cancer, which has attacked only about 100 people worldwide, is as dramatic as her parents' efforts to save her. Ping Chen and his wife, Lailing, 42, once upper-middle-class entrepreneurs in the modern south China city of Guangzhou, sold their luggage manufacturing business and all their possessions after Mon Mon got sick in August. They spent everything trying to save their only child, but doctors in China were baffled by the rare cancer. They told the Chens their only hope was to seek treatment in the United States.

Borrowing money from relatives and relying on the kindness of a longtime American friend in Newport Beach, the Chens showed up in the emergency room of UCI Medical Center on Jan. 23. Mon Mon was near death. A tumor in her abdomen was the size of a football. Another had invaded the lining of her right lung, choking off oxygen. Her heart and kidneys were failing.

Now, after four rounds of chemotherapy, the tumor in Mon Mon's belly is gone, and the one surrounding her lung has been reduced by half, said Dr. Stanley Calderwood, a pediatric oncologist who is treating her. ``This is a pretty miraculous recovery,'' Calderwood said. He pegged Mon Mon's survival rate at 50 percent, from an initial assessment of about 30 percent.

Mon Mon has four more chemotherapy treatments scheduled over the next few months, so Calderwood isn't ready to say her cancer is in remission. ``She has a lot of hardships to overcome, and she may at some point require surgery,'' he said.

Through it all, Mon Mon's parents have been her constant companions. It wasn't always so. In China, the Chens buried themselves in their business, with Mon Mon spending as much time with the help as she did with them. Now, the three are much closer.

As Mon Mon's parents quietly packed up their belongings, she chatted away on the telephone with a well-wisher. She modeled a pair of new olive-green khakis, her mostly hairless scalp covered in a pink cap. The entire pediatrics ward seems to have had a hand in Mon Mon's recovery. Some nurses volunteered their translating skills, for example. One such translator, Jen-Yi Kuo, dropped by to say goodbye. ``Everybody loves her,'' Kuo said. Another nurse, Terri Lyn Donly, joked when Mon Mon said goodbye: ``You can't go yet. I haven't learned Chinese!''

The Chens have moved into the Upper Newport Bay-area home of Marcia McCluer, a single mother who learned about the Chen's plight from her neighbor, Helen Williams, who met the Chens in China several years ago. McCluer, who has a 15-year- old son, Anton, and a stepson, Matt, 25, said she didn't hesitate clearing out her master bedroom for the Chens, who during Mon Mon's hospital stay lived at the Ronald McDonald House in Orange.

``If I were in their shoes, I'd want them to do the same for me,'' said McCluer, 45, who owns a glass-manufacturing business. ``It's what we're supposed to do: Love your neighbor as yourself. It doesn't matter if your neighbor is from China.''

Mon Mon's monthly bill for medicine and doctor visits alone will be around $5,000. That's on top of a hospital bill that is nearly $1.4 million and climbing. Donations from the community total around $14,000. A Medi-Cal application to cover Mon Mon's future treatments is pending. The Chens are here on visitor visas, but Ping Chen hopes to get a job in the import-export business on an emergency visa granted for humanitarian purposes. He pledges to pay the hospital bills. McCluer hopes others will step forward to help.

``When it comes down to it, this is what life is all about: being there to help each other and not worrying about how many oceanfront homes or Mercedes-Benzes we have,'' McCluer said. Neighbors Rich and Jill Kanzler have donated the use of an electric wheelchair.

Mon Mon is enrolled at Newport Harbor High School. She will be home-schooled for the rest of the school year. She will share the master bedroom and one bathroom with her parents. McCluer has moved into a guest room.

Ping Chen will continue to call his parents in China every night with updates. For now, the family plans to stay in Orange County. ``We like it here,'' Ping Chen said.

The Orange County Register

Saturday, January 29, 2005

At journey's end : A family from China is losing its once-hopeful quest to keep its cancer-stricken daughter alive.

By GREG HARDESTY

The blood-pressure monitor beeped. "Mon Mon, it's your boyfriend calling,'' Marcia McCluer joked. Mon Mon Chen, 16, is used to being teased by her friend, who took her and her parents into her home 10 months ago.

But from her bed this week at UCI Medical Center in Orange, Mon Mon - tubes draining bile from her stomach via her nostrils - didn't have the strength for a snappy comeback. As Mon Mon's mother, Lailing, rubbed her daughter's body to keep her dry skin from itching, McCluer tried to keep the mood light.

"Tomorrow will be a better day, won't it?" she said as Mon Mon's father, Ping, fought to keep dark thoughts from crowding his mind.

"Just one month ago we had a lot of hope - even the doctors did,'' Ping Chen, 46, said. "It's very hard to accept the truth. "Of course, for us, we still have hope that a miracle will come.''

Mon Mon may be days from a sad end to a once-hopeful saga about a husband and wife who left everything in China to save their cancer-stricken child and had their hopes rise as she staged a remarkable recovery. But after aggressive chemotherapy treatment allowed Mon Mon and her parents to live for several months in McCluer's Newport Beach home, her cancer returned in October.

It was not the outcome the Chens had hoped for when they came to the United States last January after doctors in China became stumped by the rare form of cancer that struck Mon Mon in August 2003. Mon Mon's only hope was coming to the United States for treatment, and the once- prosperous Chens sold their luggage-manufacturing business and all their possessions to make it happen.

When Mon Mon arrived in the emergency room of UCI Medical Center last January, she was near death. The tumor in her abdomen was the size of a football and another one encasing her right lung was choking off oxygen. Her affliction - desmoplastic small round-cell cancer - has attacked only a few hundred people worldwide and is highly malignant.

UCI doctors who never expected Mon Mon to live long were surprised when, after four rounds of chemotherapy, she became healthy enough to be discharged from the hospital last April. Mon Mon never was entirely out of the woods. But doctors were impressed by her spunk and positive attitude, and felt that since the teen already had escaped death once, she just might beat this cancer for good.

In October, doctors found a buildup of fluid in Mon Mon's abdomen. Besides a trip home to Newport Beach for Christmas, Mon Mon has been in the hospital ever since. More than anything, she would rather be shopping. Last summer when she was relatively healthy, Mon Mon loved to mall hop. She celebrated her 16th birthday in August, went to Disneyland and enjoyed being home-schooled. She still has a dream of visiting New York City - to shop, of course. Nurses put up a map of the city in her hospital room.

The Chens can't think about what comes next. She is their only child. For now, they want to thank people who read about Mon Mon's recovery last year in The Orange County Register for contributing about $15,000, and sending more than 100 get-well cards. Mon Mon, heavily sedated and barely able to manage a whisper, said thank you, too.

Too sick to keep down food, she asked for something to drink. A nurse brought in a tray of frozen grape juice. Lailing Chen, 43, broke a cube into smaller pieces and placed them in a paper cup. She then raised the cup to her daughter's lips.