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When doctors gave up hope, Jordyn Boucher’s family found it again at St. Jude.
“There’s nothing more that we can do,” the leukemia specialists intoned. “Your daughter’s bone marrow is packed with leukemia cells.”
“How long does she have?” choked out Jordyn Boucher’s mom.
“Could be days; could be weeks; could be months,” the doctors solemnly replied.
Jordyn’s parents looked at one another in horror. Their beautiful and charismatic 8-year-old had fought so long and so courageously. How could her battle end like this?
“I don’t even know if the human body is capable of processing the emotions you have when you hear something like that,” recalls Jordyn’s dad, Brian Boucher.
Brian looked at the three oncologists. Perhaps, he thought, there might be a treatment elsewhere that could help his daughter.
“Is there anything on this planet that is available to help Jordyn live?” he pled.
“There’s nothing that we know of,” the doctors replied.
When Brian Boucher and Tracey Sukduang faced that grim panel of physicians in November of 2009, their daughter had already been fighting acute lymphoblastic leukemia (ALL) for more than seven years.
Soon after Jordyn’s first birthday, bruises had appeared on her tiny body. The baby had become sluggish and had developed a persistent cough. Repeated trips to the pediatrician yielded nothing.
“They just thought I was a panicky mother because I was there every single week for a couple of months, saying, ‘Something’s wrong with my baby,’” Tracey recalls. “Jordyn became so lethargic that she would kind of pass out and then come to and pass out and come to again. Finally, I said, ‘I’m not leaving until you do something.’”
The couple expected blood tests to reveal a minor problem.
“We never thought it would be cancer,” Brian says.
By the time the disease was discovered, Jordyn was in danger of heart failure. Because of her young age and the late diagnosis, she was classified as a high-risk case. At a Maine hospital, Jordyn spent a couple of weeks fighting for her life in the intensive care unit. She then underwent cranial irradiation and two years of chemotherapy. Her disease finally went into remission.
“She was doing so well through her initial treatment that I think we honestly believed that was going to be it,” Brian says.
Then, at age 5, Jordyn relapsed. The day after her sixth birthday, she underwent a bone marrow transplant. The disease remained in remission until Labor Day of 2009. For a couple of months, doctors attempted to induce another remission, but they realized that Jordyn’s body had become resistant to the chemotherapy. In November, Jordyn returned to her home in New Hampshire with palliative care.
As the holiday season approached, TV stations began airing spots for St. Jude Children’s Research Hospital. Tracey watched one that featured actress Jennifer Aniston and a St. Jude patient.
“I just bent over and cried,” Tracey recalls. “I said, ‘Why can’t my daughter have that hope? She’s been fighting for so many years and has been so strong.’ I didn’t want to sit there anymore and just watch her slip away. I thought in my heart, “There’s one more thing to do. There’s one more thing to do.’”
Brian, who works for Target Corp., had learned about St. Jude through online research as well as through his company’s longtime partnership with the hospital. He approached one of Jordyn’s physicians and asked for a referral to St. Jude. Soon, he and Tracey were on a conference call with Wing Leung, MD, PhD, director of the hospital’s Bone Marrow Transplantation and Cellular Therapy program.
Leung explained that Jordyn’s genetic makeup caused her to have the most aggressive form of childhood ALL. Jordyn has a translocation of chromosomes 4 and 11, which portends a poor prognosis and makes the disease resistant to traditional treatments. But Leung had exciting news: St. Jude had opened a clinical trial designed specifically for children like Jordyn.
“All of a sudden there was a doctor who was giving us hope rather than giving up hope,” Tracey says. “Dr. Leung said that Jordyn would have about a 30 percent chance of survival if she participated in the protocol. To us, that was huge. We had a zero percent chance of survival at that point. If Jordyn fell within that 30 percent, then that was 100 percent for her.”
For Jordyn’s parents, the decision was easy.
“Dr. Leung told us, ‘You have two options,” Brian recalls. “You can do what you’re doing today, which is nothing, or you can get on a plane tomorrow morning and let me take care of your daughter.’
“We chose option B,” Brian says.
St. Jude staff immediately made airline reservations, and Jordyn and her parents arrived in Memphis the next day. After meeting with hospital staff and learning more about the protocol, Brian asked Leung, “What do Tracey and I need to do? How can we help?”
“I want you to envision your daughter with hair,” Leung told them. “I want you to envision your daughter on a plane flying home healthy, cancer free. I want you to envision her getting married, having her own family. And don’t ever lose sight of that. I’ll take care of the cancer for you; that’s my job. You just make sure you give her the optimism and support that she needs.”
“We’ve never lost sight of that—ever,” Brian says. “And that’s due to the team of doctors and nurses and employees at St. Jude who support that message.”
At St. Jude, Jordyn enrolled in a new transplant protocol designed for children who have relapsed after undergoing bone marrow transplants. The trial’s non-radiation-based conditioning regimen features a drug called clofarabine.
“To my knowledge, we are the only center that is doing clofarabine regimen the way we are giving it,” Leung explains.
The transplant Jordyn would undergo is also unique. Clinicians collect cells from a parent, process them and infuse healthy natural killer (NK) cells into the patient. St. Jude is pioneering the use of NK cells as a cancer treatment. Blood tests indicated that Brian would be the best donor for his daughter.
“Selecting the most optimal NK cell donor is essential for the success of this protocol,” Leung says. “In this case, Brian was a good match with high amounts of the NK cells in his blood. After he was chosen as the donor, we collected stem cells from him and got rid of the T cells so that there would be little risk of graft-versus-host disease.”
Leung understands why doctors at the other institution initially offered no hope to Jordyn.
“Nobody else in the country would have given her a transplant, because all other centers require the disease to be in remission first,” he says. “When Jordyn arrived at St. Jude, her bone marrow contained basically leukemic cells. Most hospitals require less than 5 percent leukemic blasts in the bone marrow before they will consider a transplant. Some centers may lift the bar a little and allow up to 25 percent. Nobody else, as far as I know, would consider a transplant with more than 25 percent blasts in her bone marrow.”
Leung says the protocol used to treat Jordyn cannot currently be duplicated elsewhere because of the expertise and resources available only at St. Jude.
“The donor-typing techniques were developed in our lab during the past several years and were not available elsewhere,” he explains. “The laboratory support necessary to remove the bad donor cells and leave behind the good cells is also not readily available. It can be done, but it’s not easy.”
Leung emphasizes that the most important advantage of St. Jude is its highly trained employees.
“In order to do this kind of high-risk trial with a lot of sophisticated laboratory techniques, you really need excellent general supportive care and lab support,” he says. “We have an outstanding pathology lab, blood bank, donor room, cell processing lab and microbiology lab. The knowledge and experience of our transplant team would be difficult to emulate. For instance, our nurse practitioners on average have more than 10 years of experience doing extremely high-risk transplants. That kind of knowledge and experience is invaluable.
“You can have the best machinery and resources available, but you would not have the same transplant results if not for the team that we have at St. Jude.”
When Jordyn arrived in Memphis in mid-December of 2009, St. Jude staff leapt into action.
“There was no time to lose,” Leung explains. “A day for her was like a year. So we did all of her workups in parallel instead of in sequence.” Jordyn’s transplant occurred on New Year’s Day 2010.
Brian was honored to serve as his daughter’s donor.
“To be told that my cells would be the medicine that would help her was powerful to hear,” he says. “The day she received her cells, it was like she was born all over again. It’s amazing to have a child. It’s equally special to save one.”
Jordyn’s disease remains in remission. “So far, so good,” her mother says. “It’s been a miracle in the making. Our daughter has touched more lives in her nine years than I will probably ever touch. All those people who didn’t believe in miracles and who saw this happen now know that you don’t give up until the end. There’s no giving up.”
“Jordyn’s doing very well now,” Leung observes. “It’s amazing.”
Jordyn and her family know firsthand the value of hope and the power of gratitude.
“I thank God for Dr. Leung, I thank God for St. Jude, and I thank God for this trial—every second of every day,” Brian says.
Reprinted from Promise Winter 2011