Family celebrates a bittersweet anniversary

dailysentinel ^ | 01.31.09 | MICHELE MARCOTTE

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Family celebrates a bittersweet anniversary

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Mary Smith describes it as a year she can never forget, yet one that she never wants to relive.  It began when her youngest daughter Emily, now 8, was diagnosed at 17 months old with neuroblastoma, a type of cancer that starts in nerve cells and expands.

Christy Wooten/The Daily Sentinel

(ENLARGE)

Emily Smith, left, gets a hug from her mother, Mary, during a classroom party Wednesday celebrating the seven year anniversary of Emily's stem cell transplant which helped her battle a form of cancer call neuroblastoma. She currently shows no signs of the disease which has high re-occurrence and low survival rates.
 

Christy Wooten/The Daily Sentinel

(ENLARGE)

Mary Smith, top right, and Susan Cox, bottom right, from the local Make A Wish Foundation, show photos to Smith's daughter, Emily's, classmates from her treatment for neuroblastoma, a form of cancer. Emily's class celebrated her the seventh anniversary of the stem cell transplant which helped save her life during class on Wednesday.
 

Emily, diagnosed as a stage IV patient, was given little hope of survival, but made a miraculous recovery, and now, with her mother, shares her story with both children and parents affected by the disease.  Wednesday, on the seventh anniversary of her stem cell transplant — the procedure that saved her life — Emily and her mother shared the year-long journey with Emily's classmates at Thomas J. Rusk Elementary.  With albums depicting the various stages of Emily's journey from pre-diagnosis to following her stem cell transplant, Donna Tubbs' third grade class, watched in amazement as they saw the physical toll the disease and treatment took on their classmate.

In addition to the albums, students saw a video of Emily prior her transplant surgery, which occurred just before her second birthday.  Emily said she enjoyed having her mother in class, and passing out the cupcakes her mother brought for the class in honor of her transplant anniversary.  Mary, a home health nurse and waitress at Delacroix's, said when Emily was 14 months old, she noticed her daughter's abdomen was widening, while her arms and legs were getting spindlier.

"What she could do at 8 months old, she couldn't do at 14 months old," Mary said. "Then, it got where she couldn't sit in a high chair or her car seat because she was so uncomfortable."  Mary said she approached her pediatrician about the possibility of her daughter having a tumor, but was quickly dismissed with, "Oh Mary, she's a baby. Babies don't get cancer."  Then her daughter began to experience bloody stools and excessive vomiting, and Mary knew something serious was wrong.

She took her to the local hospital in Cecil County, Maryland, where doctors became baffled as to the problem.  "The doctors didn't know what it was," she said. "(They'd tell me) she's got reflux, or it's the valve in her stomach. They were just guessing about everything."  Mary finally decided to take Emily to Alfred I. duPont Hospital in Wilmington, Delaware, the same children's hospital her oldest son went to for treatment for muscular dystrophy.  "They couldn't run fast enough in the ER," Mary said, of when she arrived with Emily. "They were running to get a biopsy ... Because they knew from the lymphocytes — a type of white blood cell — coming back (from testing) that it looked like cancer."

At 5:30 p.m. July 26, 2001, doctors relayed the devastating news: Emily had a 9 pound mass in her abdomen, which had wrapped around her heart and become attached to her aorta. There was nothing they could do. She was terminal.  Emily was given three rounds of chemotherapy drugs, but by Sept. 11 , 2001, things had not improved.  "At that point, she had her second last-rites read. The doctors told me she was incurable and they were just trying to keep her comfortable," Mary said. "She actually had a blood clot in her heart on Sept. 11, and we were in the operating room when the disaster occurred."

Mary said that same day she got a phone call from a friend who told her that a Catholic healer was coming to America from Australia. Mary made all the appropriate calls, and when he arrived, "he touched her, and the very next day, her tumors started shrinking."  Because of the small but significant improvement, chemotherapy treatment resumed, and on Thanksgiving Day 2001, Mary had a grapefruit-sized tumor removed from her abdomen. Through her 10 rounds of chemotherapy, her 9-lb. tumor had shrunk to the size of a grapefruit, Mary said.

But a small part of the tumor, what Mary gaged at 10 percent, was still attached to Emily's aorta, and in order for her to survive, Emily would need an autologous stem cell transplant, a procedure that had not yet been performed at the children's hospital.  The Alfred I. duPont bone marrow transplant unit — which was equipped to perform stem cell transplants — had been up and running for only six months prior to Mary's transplant, and Mary would be the first patient to have the autologous stem cell transplant there. The procedure would replace Mary's defective and damaged blood cells with her own clean stem cells that had been previously extracted from her own bone marrow. Stem cells are immature cells found in bone marrow that develop into red and white blood cells and platelets.

Emily had more than 250,000 cells extracted, which were then transported to Children's Medical Center in Los Angeles, where they were cleansed of cancer and purged of all diseases.  Just prior to her transplant, Emily was given an aggressive amount of chemotherapy, and placed into a chemically-induced coma, according to her mother.  "She was in a coma when they inseminated her with the stem cells, and she woke up the day before her second birthday," Mary said.  Five days later her stem cells began to graft, and she was on the road to recovery.

She spent the next five weeks in the hospital following her transplant, and then moved with her mother to the Ronald McDonald House for three months.  As a result of the cancer and treatment, Mary will forever have medical complications.  Due to the massive amounts of chemotherapy she underwent at such a young age, Emily's female organs and her left adrenal gland, the organ that sits above each kidney, were destroyed. Because she was teething when the treatments began, her teeth broke and gums receded. She has had multiple complications in the past seven years with her hearing and vision, and recently began to show signs of scoliosis, an abnormal curvature of the spine.  But to the uneducated eye, Emily appears like any other 8-year-old girl, fascinated by puppies and Hello Kitty, and bursting with energy.

Yet every May, she must make an annual pilgrimage to Alfred I. duPont Hospital for two days of checkups and tests.  And on each trip, along with her mother, Emily visits the children suffering from cancer, sharing her story of success with them and their parents.  On their last visit, Emily noticed a 12-year-old girl in a knit cap, carrying an IV pole into her old room. She went up to the girl, who had a knit cap on her head and walked around with an intravenous pole, and informed her that the room had been hers once upon a time, to which the girl retorted, "No it's my room."

"I'm going to pray to Jesus to help you," Emily told the girl. "Because he saved me, and he is going to save you, too."  The girl, in a saddened expression, replied, "But, I'm stage IV."  Mary, who stood by her daughter in the doorway, explained to the girl that Emily had been stage IV also. The two girls talked, and, perhaps their conversation gave the girl some hope, Mary said.  "That's why we do this," she said. "Hopefully that changed her life that day."