After immigrating, a scary diagnosis

Any child diagnosed with cancer has the battle for their life ahead of them. However, what if you lived in a third world country and didn’t know you had the disease? Rosie Jones has such a story, but thanks to the research and doctors supported by Children’s Cancer Research Fund, it has a happy ending.

Rosie’s parents, Albert and Koliju knew something was wrong with their young daughter in 2004. “Her abdomen was getting large and very firm on the right side,” recalls Albert. “and she complained of increasing pain.”

At that time, the family lived in the West African country of Liberia. “Our country was in civil unrest and medical services were not available,” says Albert. “We were just living with it until we had the opportunity to come to America.”

Luckily, through an immigration lottery, the family came to America in June, 2004 and moved to Minnesota. After having Rosie examined at a local medical center, the Jones family was referred to University of Minnesota Amplatz Children’s Hospital. On June 30, 2004, when Rosie was just under 2 years-old, the family received the frightening news: Rosie had cancer.

“When we heard the diagnosis,” recalls Albert, “we were very depressed and out of words.”

An advanced case gets aggressive treatment

Rosie was diagnosed with Stage 4 Wilms tumor on her right kidney, having spread to her lungs, liver and blood vessels around the kidney. Only 10 percent of patients with Wilms tumor are diagnosed at stage 4, so an aggressive treatment plan was necessary. Under the care of Brenda Weigel, M.D., Rose received her treatment over the next 16 months, which included chemotherapy, radiation and surgery to remove the tumor.

Rosie and her mother stayed in Minneapolis during the treatments. Albert and brother Edmond stayed six hours away in Thief River Falls where they both went to school, but they made regular visits to Minneapolis. “This was the worst part of the experience — staying separated,” says Albert. “The illness kept her away (most of the time) from her brother, who was her only friend at the time. She also missed watching movies with him.”

A comforting blanket and a Children’s Cancer Research Fund Care Partner

Two things that helped comfort Rosie while being separated from family members during this time were her Dora the Explorer blanket and her Care Partner, Karen Rodning, who typically works with international patients. Care Partners is a quality-of-life program funded by Children’s Cancer Research Fund that provides non-medical services to pediatric cancer patients and their families at Amplatz Children’s Hospital. “Karen is just wonderful,” says Albert. “She was more like family than a Care Partner to us.”

Rosie finished treatment in October, 2005. Regardless of the challenges she faced during her 16-month battle, her family remained strong and hopeful. “There is always hope, even when there seems to be none,” says Albert. “We never knew we were going to come to the USA, but we had hoped that a cure was possible.”

Today Rosie is a healthy, happy 8-year-old who excels in school and charms everyone she meets. Albert and Koliju are very proud of her progress.

Albert credits Rosie’s recovery to everyone involved in her care — from Dr Weigel and the entire medical staff to the social workers, occupational and physical therapists and lab technicians. “The treatments were just blessings,” he says. “All of those that cared for Rosie were great.”

Albert also credits Children’s Cancer Research Fund for their efforts to find new cures and improve pediatric cancer treatments. “Children’s Cancer Research Fund stood with us during our battle with cancer and their support was invaluable,” he says. “It helped save a life, which was most important of all.”

When a 13-week-old baby has a stuffy nose and a mild fever, parents don’t usually panic. A simple trip to the doctor’s office, some antibiotics and lots of rest typically takes care of things. Baby Sydney, however, did not have a simple ear infection. Her high white blood count told another story—she had leukemia.

Thus this family’s journey began with a series of days in the intensive care unit with placement of a central line next to the heart, body scan, bone marrow, and blood tests of all sorts to figure out just what type ofleukemia Sydney had. Within a few days came the final diagnosis — acute myelogenous leukemia (AML) — and that’s when they realized just how unusual Sydney’s situation was.

It was rare enough that an infant would have leukemia in the first place, they were told, but this type was exceptionally rare.

A pioneering procedure
The hospital physicians wanted to begin treatments immediately, and so did Sydney’s parents Mary and Kevin. Various protocols were discussed, with all roads eventually leading to an umbilical cord blood transplant at the place that pioneered this procedure – the University of Minnesota.

Sydney’s parents knew her case made her cancer treatment highly specialized. What they didn’t know, however, was just how dangerous the transplant process was and that the survival rate for infants was a mere 50 percent.

“We were stunned. We were told that no one had much experience working with children this young because they simply didn’t survive,” said Mary tearfully. “It was the hardest news we’d heard up until then, and all we could do was pray for the best.”

The U of M offers a unique opportunity

Because they were being treated at the University of Minnesota, one of the leading pediatric cancer research facilities in the nation, they were offered the unique opportunity to participate in a study usingmesenchymal stem cells in the transplant. The goal was to determine whether these stem cells might make the transplant safer. Mesenchymal stem cells are cells that can become the “nursing” cells of the marrow, which might help the bone marrow recover more rapidly after transplant.

“There were so many unknowns, but in the end we opted to participate because we knew if we didn’t we might be passing up the best chance of all to save our daughter,” said Mary. As it turned out, Sydney was the first in the world to receive mesenchymal stem cells from an unrelated donor.
The Wall Street Journal even called the family for an article on patient participation in clinical trials with the focus on “being the first.” “She’s a bit of a celebrity in the world of stem cell transplants,” Mary said with a smile.

Sydney recovered quickly, never relapsed, and a month later she was released from the hospital. Today she is a healthy and hasn’t seen a doctor in years except for her regular well-child visits.