Hong Kong child at Wolfson Children’s Hospital for cancer treatment to extend his life
December 26, 2013 | Jacksonville
When Colin Lam started limping a year ago, his parents thought there was something wrong with his knees.
They never imagined finding out that he had a tumor on his adrenal gland that would later spread to his bone marrow and bones.
Much less, that a year later their now 6-year-old son would be in another country receiving a therapy not available in their homeland of Hong Kong that could extend his long-term chances of survival.
But a connection with a Jacksonville doctor, Thomas T. Chiu, MD, led Colin Lam and his family to Wolfson Children’s Hospital where he’s receiving an immunotherapy treatment and protocol only available through clinical trials in the U.S.
He was in the hospital over Christmas continuing his treatment and his family plans to celebrate later with toy cars, which he loves, and Legos, a hobby since coming to the U.S.
Colin is the first child from another country to receive this treatment at Wolfson Children’s Hospital, according to Eric Sandler, MD, Colin’s primary oncologist and division chief of Hematology/Oncology for Nemours Children’s Clinic and Wolfson Children’s Hospital. Scott Bradfield, MD, section chief, Hematology/Oncology for Wolfson Children’s Hospital, has also been treating Colin.
Colin, who arrived on Nov. 15 and will be receiving treatment for six months, has Stage 4 neuroblastoma, a tumor of the sympathetic nervous system typically found in the adrenal glands, posterior mediastinum, pelvis or neck. He previously in Hong Kong had intensive chemotherapy, radiation, surgery and a bone marrow transplant.
He’s been in remission since August, which is a requirement for the clinical trial. But without the treatment there is an 80 percent chance that his cancer will return, Dr. Sandler said.
National studies have shown a significant improvement in survival for children with high-risk neuroblastoma when treated with this immunotherapy, Dr. Sandler said. Currently, more than 50 percent of children are cured as opposed to 20 percent in the 1980’s.
The immune therapy Colin is taking is only available on a clinical trial in the U.S. Wolfson Children’s Hospital is one of about 230 children’s hospitals in the country providing the treatment, which has not yet been approved by regulatory bodies in other countries.
Wolfson Children’s Hospital has been using the protocol therapy starting with the first patient in 2006. The treatment comes through the Children’s Oncology Group, which is a consortium of all children’s hospitals in the U.S. that conduct trials together. About a dozen patients have received the treatment at Wolfson Children’s Hospital and in 64 percent of the cases the cancer has not returned, Dr. Sandler said.
The treatment takes place in the hospital for two weeks each month through intravenous infusion and then involves oral medication the other two weeks of the month. The medicine he receives in the hospital is anti-GD2 antibody accompanied by interleukin-2, which Dr. Sandler said are “designed to get the immune system to attack any residual neuroblastoma cells in the body.”
“This is the last step of the best treatment known for this disease,” Dr. Sandler said. “This immune therapy has been shown to significantly improve the survival rates for children with this Stage 4 neuroblastoma.”
Neuroblastoma is one of the more common tumors Wolfson Children’s Hospital sees in children though nationally it only accounts for about 7.8 percent of all childhood cancer cases.
Colin’s mother, Eileen Kay, who has taken a leave from her job in the banking field, is thankful to the doctors and nurses at Nemours and Wolfson Children’s Hospital.
“The environment is very nice,” she said about the children’s hospital. “Everybody makes you feel very welcomed. It’s like a home.”
She and her husband, Harold Lam, are also grateful to the staff at the Ronald McDonald House Charities of Jacksonville, which supports the health and well-being of children by providing lodging and other services for critically ill, chronically ill and seriously injured children and their families. Colin and his family are staying at the Ronald McDonald House, which includes 30 bedrooms, play areas, kitchen, business center, dining room and family sitting areas.
She also has immense appreciation for Dr. Chiu and her uncle, Dr. Roy Pang, who works in New Hampshire doing research on cancer and went to high school and college with Dr. Chiu’s wife.
Dr. Chiu, a neonatologist and former chair of pediatrics at the University of Florida College of Medicine-Jacksonville, helped connect the family with Wolfson Children’s Hospital.
“I really thank God for my uncle, Dr. Pang, and Dr. Chiu,” she said. “Without my uncle, I wouldn’t have known about Dr. Chiu and Colin wouldn't have a chance of getting this treatment. Harold and I are also very grateful to Grandma Diana, Aunt Evelyn for being here in the U.S. and our family and friends back home for their prayers and concern for Colin.”
While Colin’s dealing with some side effects such as pain, fever and cough, his mother said that “he’s still very cheerful.”
“This treatment is often associated with lots of side effects but he’s been tolerating it pretty well,” Dr. Sandler added.
Finding out her son had cancer early last year, was news she never expected.
“It was very tough. You don’t want to believe your son has it,” Eileen Kay said.
But being in remission and now having another treatment option to improve his long-range prognosis, gives her hope.
Colin, who will be in the first grade in September, painted recently in his hospital room surrounded by his favorite yellow stuffed animal ducks and cars. He enjoys everything to do with cars, including riding electric scooters at the grocery store.
For a recent picture, he held onto one of his toy ducks and held up his fingers in a “V” in what his family calls a victory sign.
Having Colin and his family at Wolfson Children’s Hospital, shows the reputation the hospital is receiving, doctors say.
“We are getting a reputation around the world for the care that we give and we actually have lots of patients who are coming here from all over the world,” Dr. Sandler said. “I think that is going to continue to grow.”
Dr. Chiu also said the family choosing to come to Wolfson Children’s Hospital over other children’s hospitals in the U.S. speaks highly for the hospital.
Chiu and Sandler have been visiting professors to medical universities in China and Hong Kong.
Shaelyn Moyer, of St. Augustine, who will turn 5 in April, went through the immunotherapy treatment with doctors from Nemours and Wolfson Children’s Hospital from January through June of 2012.
She was just 23 months old when she was diagnosed with Stage 4 neuroblastoma. Her parents first noticed yellow bruising on her eyelid and soon found out after having scans that she had a mass in the bone above her right eye and another tumor in her chest area.
What followed was almost two years of treatments, according to her mom, Lauren Moyer, including the immunotherapy to keep the cancer from returning.
While she said each step of the treatments were hard on her daughter, she was thankful there was another option.
“It was really a hard treatment, but you just have to stick it out one day at a time and just do it. If you don’t go through it, then you risk it coming back,” her mother said.
Now her daughter continues to get periodic scans, which have “been good and clear,” Moyer said.
“She is fantastic,” her mother said about her daughter who is in pre-school. “She is just normal. She has all her energy and is fine. She gets her little sicknesses like every other kid in her class, but her immune system isn’t compromised.”
Her daughter may join a swim team next summer, she is doing so well.
“She loves to sing and dance and is a fantastic swimmer,” she said.