Aztec Down Syndrome Girl Fights Leukemia

By Alysa Landry, The Daily Times, Farmington, N.M.

Aug. 3–ALBUQUERQUE — Two cable-knit sweaters, one white and one red, formed a makeshift pillow on which Jessica Mitchell, of Aztec, rested her head as she waited in an otherwise colorless examination room Tuesday morning at the University of New Mexico Children’s Hospital.

Her face and lips were just as pale — a telltale sign that she needed a blood transfusion.

Jessica, 16, has leukemia.

The cancer, which means “white blood” in Greek, is characterized by an abnormal multiplication of white blood cells and a subsequent deficiency in red blood cells. Jessica, who also has Down Syndrome, was at risk for the disease since birth.

“They told me when she was born that she had a high risk for leukemia,” said Jessica’s mother, Christine Mitchell. “I just never thought it would happen.”

Christine is the kind of mother who buys organic peanut butter and reads the labels on the backs of cereal boxes and fruit snacks. She makes lists of chemicals and food additives suspected to cause cancer and bans them from her home.

Christine is the mother of four daughters and one son, and she knew her oldest child had leukemia before doctors made the diagnosis in May.

“Jessica was complaining that her knee hurt,” she said. “Then it was her shoulder. Then it was her ribs. I told my husband, It’s like her bones hurt. There’s only one thing that makes your bones hurt.’”

The diagnosis

Half a year ago, Jessica was playing basketball and running track at Aztec High School. When she suddenly slowed down, her mother knew something was wrong.

“She started sleeping all the time,” Christine said. “Then she lost nine pounds in 10 days. When these things started happening, I thought, this is not Jessica.’”

Half a dozen blood and bone marrow tests confirmed Christine’s fear, launching the family on a two-and-one-half year journey through chemotherapy.

Jessica has Acute Lymphoblastic Leukemia, the most common cancer in children, according to National Cancer Institute data. It represents 23 percent of cancer diagnoses in children younger than 15, and occurs in about one of every 29,000 children in the United States every year.

All cancer in children is rare, said Dr. James McKinnell, attending physician in the Pediatric Oncology Ward at the UNM Children’s Hospital. But the numbers are rising.

“It’s a relatively uncommon phenomenon,” he said. “The number for a long time, for incidents of childhood cancers overall, was 6,000 cases per year in the United States. About five years ago, that 6,000 suddenly became 7,000, but it’s still a very, very rare phenomenon.”

By contrast, doctors diagnose more than 1 million adults with cancer in the United States per year, McKinnell said.

Scientists have not pinpointed the cause of leukemia, although it is believed to stem from a combination of genetic and environmental factors.

“One of the questions many families have when their children are diagnosed is why did my child get leukemia as opposed to another child,” McKinnell said. “Most of the time, we don’t know the answer to that question.”

One thing on which doctors agree is that leukemia is associated with chromosomal abnormalities. For example, children with Down Syndrome are 30 times more likely to get leukemia than children in the general population.

The diagnosis can be particularly cruel in this special population; children born with Down Syndrome generally have a shorter life expectancy than their healthier counterparts.

For Jessica, who will be a sophomore at Aztec High School this fall, the second diagnosis meant a double dose of stress for her family.

“She is very high-functioning, and we worked really hard to get there,” Christine said of her daughter. “Then this happened. I’m still in denial over the first diagnosis. How am I supposed to deal with the second?”

Because of her age, Jessica is a higher-risk patient than other children with leukemia, McKinnell said.

“If we’re talking about age as a risk factor, a good age is between 2 and 10,” he said. “Kids that are older than 10 at the time they are diagnosed are considered to be a higher risk.”

Higher-risk patients can face complications with treatment, including higher sensitivity to chemotherapy and lower tolerance to some medications.

The treatment

The same white and red cable-knit sweaters hung on two chairs near Jessica on Tuesday afternoon on the sixth floor of the Pediatric Oncology Ward. The sweaters were at once familiar and warm, and Jessica’s temperature fluctuated during the two hours she endured a blood transfusion, but her faint complexion slowly gained color.

Doctors pegged her for a blood transfusion when she walked in the door downstairs. They took a hemoglobin count, then sent her to the sixth floor, where children lie back on plump blue chairs as blood drips from bags hanging overhead and flows through narrow tubes directly into their veins.

Jessica makes the six-hour, round-trip journey to Albuquerque at least once a week, sometimes staying all week in the nearby Casa Esperanza, a nonprofit home for families of cancer patients. Doctors at the hospital monitor her white and red blood cells and prescribe chemotherapy treatments and blood transfusions.

“We’re giving her two drugs today,” McKinnell said. “She gets one squirt into her blood stream and two shots directly into her muscles, then she has five days of oral steroids.”

Jessica also gets periodic spinal taps so doctors can look for cancer cells in her central nervous system. During spinal taps, doctors inject chemotherapy into the spinal cord to kill any cancer cells that might be hiding there.

Jessica’s hemoglobin count was 7.6 Tuesday. She knows if it is less than eight, she needs blood. A low hemoglobin count indicates a loss of red blood cells, which can lead to anemia.

Doctors surgically inserted a port into her chest from which they can take or give blood without using additional needles. The blood drains from the bag slowly and nurses monitor the transfusion every half-hour, watching for any signs of infection.

Because chemotherapy kills white blood cells — the cells linked to the immune system, doctors must ensure a patient is well enough to endure the procedure. Minor infections, fevers or flu symptoms are not ignored, McKinnell said.

“It’s not possible to transfuse white blood cells, so if the patient is sick, we don’t just tell her to take a Tylenol,” he said. “We have to be concerned about the immune system because if white blood cells are really low, infections can become more severe.”

A low blood cell count, however, can indicate success, Christine said. When Jessica needs a blood transfusion, that means the chemotherapy is working.

“We’ve learned that when it comes to cancer, bad is sometimes good,” Christine said. “When she’s pale, that means the drugs are killing her blood cells, so they’re getting rid of the cancer.”

The first phase of Jessica’s treatment, called induction, included a three-week stay at the hospital and two more weeks of intense treatment, during which she had a blood transfusion four days per week.

The purpose of the induction period is to kill as many cancer cells as possible, pediatric nurse Catha Hayes said.

“We look at induction as a big field of weeds,” she said. “We go in and kill them all.”

Jessica is in her second phase of treatment, a 57-day process called consolidation. During consolidation, doctors go after the roots, Hayes said.

“Weeds may still be coming up, but we’re nipping them in the bud,” she said.

Different drugs are used during consolidation, McKinnell said. The goal is to eradicate the leukemia cells that survived the first treatments.

The final phase, maintenance, is a two-year schedule of regular chemotherapy. The doses are lower than before, but continue for a prolonged period to ensure all cancerous cells are removed. During the maintenance phase, doctors will scour Jessica’s system for nests of leukemia cells, which can hide in areas not reached by regular chemotherapy, such as the brain, eyes, and in male patients, the testes.

“As a rule, boys don’t do as well with leukemia as girls,” McKinnell said. “The testes act as a sanctuary, so if Jessica were a boy, that two years of maintenance would turn into three years.”

The treatment protocol translates into long road trips for Jessica and even longer hospital procedures. The expenses are high, and the constant time away from home is taking its toll on the family, Christine said.

The alternative, however, is almost unbearable.

“When we first found out she had cancer, Jessica asked me if she was going to die,” Christine said. “I told her if we don’t do this, she would die. She looked at me and said, OK.’”

The good news

Jessica was diagnosed with Down Syndrome 10 days after her birth, Christine said. The second diagnosis 16 years later was like the proverbial drop of lemon juice in a paper cut.

Jessica, who adores princesses, horses and being home with her family, is not the girl who was supposed to get cancer. However, the same genetic code that predestined her for cancer may be her salvation.

“Because of the chromosomal abnormality, Down Syndrome kids are much more sensitive to chemotherapy,” McKinnell said. “They respond better to treatments, and what we’re learning now is adjustments have to be made to the protocol. We have to adjust them (the chemicals) down.”

Jessica’s age and physical condition also contribute to the positive prognosis.

Pediatric cancer patients face an 80-percent survival rate, a number that has soared in the last three decades due to medical advances, McKinnell said. The survival rate 30 years ago was about 20 percent. Adult cancer patients face a much lower success rate.

“Children are incredibly resilient and actually tolerate this treatment better than adults, so we treat them more aggressively than we treat adults,” he said. “In pediatric oncology cases, we can fix it. In most cases, we can fix it very successfully.”

Down Syndrome children, who often are characterized by their innocent, happy-go-lucky mentalities, can be the best cancer patients, said pediatric nurse Janell Morris. The innocence often translates into a calmness that makes treatment more successful.

“Jessica is a real trooper,” she said. “She just takes this in stride and does a lot better than most kids, who cry and scream.”

Jessica’s perpetual tranquility is one of her most endearing qualities, and that personality trait may help save her life.

“I don’t think she fully understands the magnitude of this,” Christine said of her daughter. “It ends up better, though, because she’s not getting herself all worked up and stressed out, so she doesn’t get the nausea or some of the other side effects.”

The shots of chemotherapy were the last procedure Jessica endured Tuesday, and it was the worst. Two nurses, each armed with a thick needle, counted to three and simultaneously injected the drugs into the muscles on top of Jessica’s thighs.

It’s an extraordinary experience for anyone to go through, Christine said, but it has become routine. The procedure will be part of Jessica’s life for the next two years.

“You can never guess what is going to happen in life,” she said, as she folded the two cable-knit sweaters, one white and one red, and packed them into a bag she takes to Albuquerque every week. “You’ve just got to live it.”

Alysa Landry: alandry@daily-times.com

Want to help Jessica?

Friends of the Mitchell family are hosting a fund raising event on Saturday, Sept. 13 at the Lions Wilderness Park amphitheater.

Dinner will be served from 5:30 to 7:30 p.m. with entertainment provided by musicians Sheldon Pickering, Robin Woodard and the Worth sisters.

Actress and playwright Sharon French will perform her one-woman show “The Black Shawl,” from 7:30 to 9:30 p.m.

Admission is $15 for adults and $6 for children 12 and under.

Tickets are available at Vanilla Moose or Andrea Kristina’s.

For information, call Julie Burch at (505) 486-9094 or Paula Savage at (505) 326-0251.

—–

To see more of The Daily Times, or to subscribe to the newspaper, go to http://www.daily-times.com.

Copyright (c) 2008, The Daily Times, Farmington, N.M.

Distributed by McClatchy-Tribune Information Services.

For reprints, email tmsreprints@permissionsgroup.com, call 800-374-7985 or 847-635-6550, send a fax to 847-635-6968, or write to The Permissions Group Inc., 1247 Milwaukee Ave., Suite 303, Glenview, IL 60025, USA.