Rosemary Iwakura, 17, was experiencing strange symptoms before her acute lymphoblastic leukemia diagnosis (ALL) almost two years ago. She was unable to focus on her schoolwork or activities and fainted on several occasions at school and at home.
“I thought; ‘People faint for many reasons,’” she recalls. “We weren’t sure if we were supposed to be worried.”
“It’s hard with teenagers,” says her mother, Keiko Iwakura. “They have a lot going on. Rosemary was up early for school and going to bed late doing homework, and at that age you don’t really want to talk to your mom. You want to be independent.”
The tipping point came when she realized her daughter didn’t have enough energy to make it down the stairs from her bedroom on the second floor and had developed a high fever. At first, their pediatrician thought it just had something to do with Rosemary’s changing hormones, but her fever wouldn’t break, she began seeing dots in her vision, and her skin was unusually pale — all symptoms of anemia.
So, Keiko Iwakura took her daughter to Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, where they did blood tests that revealed Rosemary was anemic and had early-T precursor ALL, a rare subtype of pediatric leukemia.
She says that she was almost relieved to get her diagnosis.
“I was more scared when I didn’t know what was going on with my symptoms,” Rosemary recalls. “I felt better knowing what it was and having a plan to treat it.”
The inpatient pediatric fellow, Andrew Groves, MD, and his attending physician, Kimberly Davies, MD, began induction treatment immediately after an initial blood transfusion to get her low hemoglobin levels up. Raising her hemoglobin would help to alleviate her anemic symptoms so her team could begin treatment.
Rosemary experienced several side effects while she was admitted to the hospital, but her mother was impressed with her attitude throughout her treatment.
“She was very interested in the science of everything,” Keiko Iwakura says. “She was very tough and always so positive.”
Unfortunately, Rosemary’s disease did not respond to the first line of treatment. Undeterred, Davies and Groves began second line of intensive chemotherapy in the hopes that they could fight back enough of the disease to get Rosemary ready for a bone marrow transplant.
“Dr. Davies was integral to the success of this case. With her expertise and experience with difficult leukemia cases, she knew exactly what Rosemary’s next treatment option should be,” says Groves.
Rosemary Iwakura kept her head up even when she began to lose her hair.
“I always wanted to have short hair and just never really got around to it,” she says.
Her brother, Kosei Iwakura, was a perfect candidate for a transplant, a procedure that Rosemary would need to give her the best chance of a long-lasting cure. The procedure aims to treat any remaining blood cancer cells and provides healthy blood cells for the immune system to recover.
“One of the big concerns with a transplant is graft versus host disease, where the transplanted cells attack normal tissues,” explains Groves. “That risk is lower with a transplant from a sibling.”
“Kosei was always worried about Rosemary,” says the kids’ mother. “He was always asking how he could help. So, when I told him that his bone marrow was a perfect match, he was thrilled.”
The transplant was a success. However, two weeks later, Rosemary was admitted to the ICU for veno-occlusive disease (VOD). Her liver failed, which led to accumulation of fluid in her body and kidney dysfunction.
“The treatment course for bone marrow transplant is very tough,” says Groves.
“There are a number of complications that we monitor for in the time period between stem cell infusion and engrafting, when the stem cells take to the patient’s bone marrow and begin to reproduce. VOD can be one of the most severe.”
Dana-Farber/Boston Children’s oncologists are prepared for this possibility and partner closely with intensive care unit providers at Boston Children’s Hospital. Rosemary was placed in a medically induced coma for seven days. With the help of her team in the ICU and at Dana-Farber/Boston Children’s, she began to recover and entered the engraftment stage.
“Rosemary’s case is a great example of how the interdisciplinary approach here at Dana-Farber/Boston Children’s can handle a complicated case,” says Groves.
A patient inspired by her treatment
Keiko and Rosemary advise other children and parents in the midst of cancer treatment to seek out the support services that Dana-Farber/Boston Children’s offers, including social workers and psychologists.
“Never be afraid to ask for help,” says Rosemary. “We always say that it’s unfortunate we have to deal with cancer, but we’re fortunate that we live in Massachusetts, 30 minutes from Dana-Farber. We were in good hands. We even miss going there now.”
Rosemary’s treatment journey has inspired her to explore the healthcare field and science in general.
“I thought it was super cool to try to learn all of the terminology. It definitely helped me in biology class,” she jokes.
Now a junior in high school, she has also returned to her passion for drawing, singing, fashion and baking.
“The biggest credit in this needs to go to Rosemary and her parents,” says Groves. “She had such an amazing outlook throughout her treatment course, and is such an inspiration to me and everyone else she meets.”