ENFIELD, Conn. – When 7-year-old Emma Duffin came down with strep throat last spring, her family never imagined the journey that illness would begin.
When Emma spiked a 104-degree fever, her mother took her to the emergency room at Johnson Memorial Hospital in Stafford Springs, Conn.
A doctor noticed Emma had dangerously low red and white blood cell counts, so she was sent to Connecticut Children's Medical Center for more tests. Her hemogobin level, normally a 12, was at 3. She received three pints of blood.
A few days later, a diagnosis: leukemia. A biopsy indicated the disease was located in her bone marrow.
"That was Mother's Day weekend," Allyson Duffin, Emma's mother, said recently. "We cried and then said, 'Now what?'"
Samples of Emma's bone marrow were sent to the Mayo Clinic Cancer Center in Rochester, Minn., Sloan Kettering Cancer Center in New York, and the Dana Farber Cancer Institute in Boston to determine what type of leukemia she had.
It turned out Emma has a rare form of leukemia called acute undifferentiated leukemia that is especially rare in children, according to Dr. Natalie Bezler, Emma's doctor at CCMC. Effects on the cellular level can differ from patient to patient.
"At first I thought cancer was a disease by itself, you just had 'cancer,'" Emma said. "But, no, there's different types of cancer."
The summer brought a new set of challenges for the Duffin family.
Emma was undergoing treatment at both CCMC and Boston Children's Hospital. Both sets of grandparents, who live near Phoenix, pitched in to help take care of Emma's brother, 11-year-old Alex, while her parents spent time with her in the hospital.
"We felt bad for Alex. He would say, 'Nothing's fun without Emma,'" Allyson Duffin said.
Doctors recommended that Emma receive a bone marrow transplant, but first she needed chemotherapy to reduce the cancer in the blood cells in her marrow. The stem cells in the new bone marrow would then stimulate new growth, suppress the disease, and reduce the possibility of a relapse.
After three rounds of chemotherapy, starting May 22 and finishing around mid-September, Emma went from having 70 percent of her cells affected to 0.2 percent.
Now it was time to find a bone marrow donor. When the family was tested, Alex was a perfect match.
"I was pretty shocked when I found out," said Alex, a sixth-grader. "I was hoping it was me."
"When we found out … it was like, we deserved it, that something would just work in our favor," Allyson said. "We are very blessed."
Because some bone marrow transplants are unsuccessful, his parents told Alex that even if his marrow couldn't help Emma, "it's the thought and love that counts," Allyson said. "We don't want him to feel as though it was his responsibility."
On Sept. 2, Emma celebrated her eighth birthday in her room at CCMC while she awaited her bone marrow transplant.
"My mom decorated my room for (my) birthday," Emma said. "Oh, it was great."
Her classmates at her elementary school gathered in the gym and sang "Happy Birthday" to Emma.
Before she headed to Boston Children's Hospital to prepare for the transplant, Emma and her family visited her friends at school and attended a Boston Red Sox game.
On Sept. 26, Emma entered the hospital in Boston to begin "conditioning" for the transplant. The process includes "two days of chemotherapy and four days of radiation therapy," Allyson said. "It's meant to completely obliterate her bone marrow so she'd take to Alex's when it was transplanted."
On Oct. 2, both Duffin children went into surgery: Alex to donate his marrow, Emma to receive it. Doctors used needles to withdraw Alex's liquid marrow, which was then infused into Emma's bloodstream. Because blood cells know where they belong, Alex's cells migrated into Emma's bone marrow.
Both children came through their procedures with flying colors. The only side effect was a rash that Emma developed.
"I was so itchy – my hands and feet – it hurt and stung," Emma said.
As her body built new blood cells from the transplant, Emma celebrated Halloween at Boston Children's, dressed as Queen Elsa from the movie "Frozen."
A few days later, on Nov. 3, Emma was discharged from Boston Children's and, after a brief stay at the Ronald McDonald House nearby, returned to Enfield on Nov. 6.
Now, Emma goes for treatment once a week for about two hours, alternating between CCMC and Boston Children's, Brian Duffin said.
Because it will take a while for Emma's immune system to get back to full strength, her family has had to learn some new habits. A large container of hand sanitizer sits near the front door, and antiseptic wipes have replaced paper towels.
"Purell is always around," Brian said. "We all have to get our flu shots."
The only people allowed in the house are immediate family members, medical professionals and Emma's tutor, who comes three times a week for an hour. Allyson hopes Emma can rejoin her fourth-grade class next school year.
Emma receives medicine and nutrients through a tube in her nose. Some of those medicines, she said, make her nauseous.
Her activities are limited, for now.
"She can be outside for fresh air," Allyson said. "We can go to the park or to pick apples. What we can't do is go to Target on the weekend or go to school."
Emma, who lost her hair to the chemotherapy, said she's had to explain her cancer on a few occasions. Once, when she was in the park, a little girl asked her mother why she didn't have hair.
"I told her, I have a disease called cancer and some of the medicine made my hair fall out," Emma said.
That matter-of-fact acceptance wasn't always the case, her mother said.
"When we explained to her that she would start to lose her hair, she kind of started to cry, but then we just said our go-to line, Emma's motto – 'Ugh, stupid cancer,'" Allyson said. "Whenever we can't go somewhere, we don't get sad about it, we just say, 'Ugh, stupid cancer.'"
Throughout Emma's battle with cancer, her hometown of Enfield has helped her family in many ways. The local organization 2Moms on a Mission arranged a penny auction night with proceeds going to the Duffin family. Alex will get free karate classes to replace those he missed while he was hospitalized and recovering from his bone marrow donation. And Emma, when she is ready, will have free dance classes.
One person set up a YouCaring.com account for Emma; so far it has raised $8,000 for medical and travel costs.
"In today's economy, it's invaluable to have that kind of support," Brian said.
Allyson, who was working part time when Emma was diagnosed, quit to take care of Emma.
Brian, who works for a company that supplies locks and security systems, said the company has been extremely flexible during Emma's treatment.
The family has a Facebook page, "Emma's Journey to Remission," on which they share updates on Emma's condition. They usually end posts with the hashtags #HopeChangesEverything and #EmmasJourney.
Whether Emma's leukemia went into remission as a result of the transplant won't be known until January, when Emma goes back to Boston Children's to have her bone marrow tested.
"I think there's a part of her that knows she could die," Allyson said. "But, she remains positive."
Bezler, Emma's doctor, said that attitude has been an inspiration to some of the shyer patients in the oncology and hemotology unit at CCMC.
"The whole family, they're a model family, they've been so positive throughout," Bezler said. "They make caring for them very easy."
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