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“The care received and the entire experience was nothing but exceptional. We not only met some great people but gained a new respect for the University of Iowa Hospitals and Clinics.”
—Robert Klein
Virginia family finds the experts they need to manage their son’s lymphatic lesions at University of Iowa Children's Hospital
Robert Klein and his family were visiting his parents six years ago when something odd piqued his curiosity.
“We noticed that my oldest son’s (James) jaw-line was sagging,” says Klein, who lives with his wife, Suzanne, and other sons, Matt, 6, and Scott, 2, in Reston, Virginia. “We thought maybe he had swollen lymph nodes so we took him to a doctor.”
A CT scan performed by a local otolaryngologist provided a surprise diagnosis: lymphatic malformation or lymphangioma.
Lymphatic malformations occur when the lymphatic system develops abnormally in children. These malformations can range from mild to severe and most commonly appear in the head and neck. The lesions might enlarge with a cold or illness, or fluctuate in size, but typically do not go away on their own.
“We wanted our son to receive the best and least risky treatment,” Klein says.
While surgery has typically been the treatment of choice, the rate of recurrence for lymphangioma lesions is often as high as 50 percent. That’s why the Kleins were intrigued when their otolaryngologist mentioned a new study being conducted at University of Iowa Children's Hospital, a part of University of Iowa Hospitals and Clinics.
Klein had never been to Iowa and knew and had no idea the University’s Department of Otolaryngology--Head and Neck Surgery was so highly regarded (ranked second nationally by USNews & World Report). However, the Virginia physician’s comments led the Kleins to make a series of calls to Diane Burke, R.N., the study’s nurse coordinator, and to otolaryngologist Richard J.H. Smith, M.D., who initiated the study.
“They said Johns Hopkins was one of 12 U.S. sites for the study so we went there to see Dr. Mark Richardson,” Klein says.
The clinical trial involves three injections of OK-432 (Picibanil). While a pilot study indicated the drug does not work on very small cysts, the Iowa-based trial is evaluating OK-432’s effectiveness against larger cysts (about 2 milliliters in volume).
Smith says the results to date are encouraging.
“We now have 260 patients in the study around the nation and receive calls every day from patients and physicians from here and around the world who want to use the drug,” he says. “Our hope is to prove to the FDA it should be a first-line option versus surgery for the proper candidate. And we thought James Klein was an excellent candidate.”
James received treatment after the size of his lymphangioma doubled to the dimensions of a half-size orange. Following protocol, he received two injections of OK-432 at John Hopkins. The third and final treatment would have been given there as well except Richardson left Hopkins for a new position in Portland Oregon.
At that point the Kleins decided to seek the third injection from the experts they had gotten to know and love on the telephone. So they packed up the car and drove all the way to Iowa City from Virginia at Thanksgiving time in 2001.
“It was the perfect opportunity to get the best treatment for James and finally meet Diane Burk and Dr. Smith” Klein says. “When we arrived at the clinic we could hear their voices in another room and we knew who it was.”
Smith says the outlook for James is excellent. “He had what we call complete resolution of his cystic hygroma. Patients have a two-year follow-up period once they are done with treatment so we will be monitoring any recurrence.”
Robert Klein was so pleased and impressed that he wrote two letters: one to his congressman encouraging federal support for the OK-432 trial, and the other encouraging relatives to donate to UI’s treatment and research efforts in the area of lymphangioma.
For more information about lymphangioma treatment or research, patients and families may call UI Health Access and ask for otolaryngology research coordinator Diane Burke, or contact her directly at 319-356-1765 or diane-burke@uiowa.edu. Physicians should call UI Consult.
Online Giving Page for the Lymphangioma Research Fund
About lymphangiomas
- Rare
- No risk of malignant transformation
- Strong tendency to recur
- No racial predominance
- Seemingly not sex specific
- Can occur at any age
- Most common at birth/early life
OK-432 clinical trial team
- Richard J. Smith, M.D., principal investigator
- Diane Burke R.N., B.S.N., clinical study coordinator
- Nancy Bauman, M.D., co-investigator
- Jose Manaligod, M.D., co-investigator
- Yutaka Sato, M.D., c-investigator
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