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Finding Hope After Grief

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When H. "Sarah" Pham-Nguyen's son asked for Goldfish snacks, his favorite, Nguyen's heart broke. She had been at his bedside night and day, secretly snacking in the morning, because she couldn't let her 20-month-old son Chauncellor see she was eating. She was seven months pregnant, while he had a rare form of cancer.

"I was just a mess," said the Fairfax resident, who stayed by her son's bedside for the whole time during his stay at Children's Hospital, except for when she had to deliver her baby.

Although not infected herself, Nguyen battled with cancer as if her son's flesh and bone were her own. Although she lost the fight, his death led her to create a foundation to serve parents whose children also have cancer. While the memories from three years ago still smart, helping other parents who are suffering or grieving has become a focus for Nguyen and her foundation, which she named after her son.

"It's really in me to do this cause," explained Nguyen.

Dr. Larry Lee, a Manassas-based pastor who serves on the Chauncellor Foundation's board of directors, thinks the foundation serves a need in the area.

"There is no question that there are a lot of families that go through this," Lee said. "Out in the larger community, most people have never gone through the loss of a child. [The support groups] are just people sharing what worked for them, what didn't. Just the sense of knowing you're not alone."

CHAUNCELLOR NOAH NGUYEN was 22 months old when he died in July 2000. His parents didn't know he had cancer until he was 19 months. He had swollen lymph nodes, and when the first visit to the doctor proved unsuccessful in curing his ailment, he was admitted to the hospital after the nodes grew and the fever continued.

The results from a liver biopsy showed signs of cancer, but no one knew what kind. When doctors diagnosed the ailment as familial erythrolymphophagocytosis (FEL), an aggressive form of cancer, they learned that the only treatment available was a bone marrow transplant.

Simultaneously, while the Nguyens were waiting for results, Sarah Nguyen was six or seven months pregnant. She took a leave from her job, while her husband stayed at his so they could keep his insurance.

"I don't know how I made it through, but I think it was God who got me through it," Nguyen said.

While the hospital was busy preparing for a bone marrow transplant, a friend of the Nguyens, a pathologist who specialized in lung cancer, looked at the biopsy and thought it resembled T-cell lymphoma. After another look by doctors, Chauncellor was rediagnosed with having the X-linked lymphoproliferative disorder, or XLP.

Also called Duncan's Disease, the disorder XLP, which occurs in one case in a million, affects young boys and is passed down through the mother's genes. By having the bad gene, the person easily falls ill to ubiquitous Epstein-Barr virus (EBV), which causes infectious mononucleosis. But instead of acquiring a cold or a sore throat, the person develops one or a combination of the following ailments: mononucleosis, aplastic anemia or bone marrow failure, lymphoma, or hypogammaglobulinemia, which is the inability to produce antibodies.

Once the Nguyens knew what Chauncellor had, they communicated with doctors nationwide to see if they had treated similar cases, since their hospital in Fairfax had never seen such a case. Chauncellor was then transferred to Children's Hospital in Washington, D.C., and doctors worked with a New York hospital on Chauncellor's treatment protocol.

"They were really great doctors at Children's," Nguyen said. "They make children very comfortable, and they make sure the parents are part of the treatment program."

While the Nguyens watched the treatment of their son, they weighed whether they should induce labor for the unborn child, so that doctors could see if they could harvest the baby's cord blood for a bone marrow transplant. They decided to induce labor four weeks early. Once the birth was done, Nguyen took the baby to Chauncellor so he could see his baby brother. Being younger than 2, Chauncellor could only speak a few words, but Nguyen hoped the visit would cheer him up.

After some tests, they learned that the cord blood matched Chauncellor's blood 100 percent. The discovery infused his parents and the hospital staff with hope.

But the match came too late, as the next day, Chauncellor was admitted to the intensive care unit for contracting an infection. When Nguyen visited him, his hospital room had an air filter. Chauncellor was breathing heavily on a respirator.

"It was just a horrible sight for me to see that. He had 20 tubes in his body," Nguyen said.

On July 17, at 9 p.m., the doctor told them they had done all they could. He said, when it comes to that time, he lets the parents stay while their child rests. Chauncellor's parents knew.

"He wasn't there anymore. His eyes were not reacting to the light," Nguyen said. "We just held Chauncellor, and we prayed. I asked God, please God, if you have no other purpose for him on Earth, then please take him, because I don't want him to suffer anymore. Because even if he lived, he'd be brain dead."

Chauncellor died 3 1/2 hours later, on July 18, at 12:30 a.m.. His baby brother was outside in the waiting room with Nguyen's mother-in-law. Nguyen was supposed to feed him, but she didn't have any milk.

FOR TWO YEARS after her son's death, Nguyen fell into a depression. She went two to three nights straight without sleeping, wishing that all that had happened was just a nightmare.

A year ago, Nguyen was on the Internet looking for foundations and charities that would help her, when she began reading about organizations that people had founded in honor of a loved one. She thought that with her experience, she could help area parents going through similar situations. Not only could she talk to them about grieving, she could help them with navigating through managed care.

"I thought to myself, other people have their reasons to start these things. Why don't I start something to help people locally?" Nguyen said. "Maybe I can help them, and they can help me with my old wounds."

With help from friends and family, she created the Chauncellor Foundation, which aims to support parents whose children have cancer. The foundation provides online cancer resources, connects parents with grief support groups, and provides financial assistance to families whose children have cancer.

"I think it's wonderful. It will help other families going through the same thing," said Terri Mann of Manassas, a friend who agreed to be on the foundation's board.

Since its founding last year, the foundation has provided meal tickets and transportation costs for families and has given bears to hospital-bound children and coolers to their parents.

"I think it's a very fine ministry to set forth," said Lee. "She's a very hardworking person, and she believes deeply in what she's doing."

As the foundation expands in 2004, its founders hope to participate with other organizations to promote cancer awareness, education and research. They also hope to outreach to the local community, by giving ribbons to remind citizens of individuals who have cancer.

Nguyen believes the foundation has the blessing of her son, who squeezed her hand before he died.

"I really do have a passion, I think. In a way, this is my next first love," Nguyen said.