The family, with roots in Willingboro, New Jersey, discovered the value of a second opinion, and two local hospitals working together to help children.
Two-year-old Miniya Rives is recovering from a procedure that has not only saved her life but also her left eye.
When Miniya was just 6 months old, her parents, Walter and Robina, noticed a white glimmer in her eye whenever they took her picture.
"Seeing the pictures on my computer every day I kept thinking something is wrong," says Walter.
He was right. An eye specialist diagnosed Miniya with retinoblastoma, cancer in the back of her eye.
"It was a nightmare. I just cried and cried for days," says Robina of getting the diagnosis.
She was treated at a hospital in Washington, D.C.
Traditional chemotherapy given throughout her body shrank the tumor, but when she was almost two another appeared. This time, they were told their options were limited. They scheduled surgery to remove Miniya's eye.
But at the urging of Robina's parents in Willingboro, they decided to also get a second opinion at Wills Eye Institute. Her father had been a patient there.
Their appointment in late October happened to be the day Superstorm Sandy was approaching.
Walter remembers the drive, "Rain pouring, we're heading down 95 and the whole way I am just thinking we should turn back."
When Walter called home, reporting on the driving conditions, Robina admits she had her doubts.
"Are they really going to tell us anything different? Am I risking my husband's and child's life by sending them on the road?," she wondered.
Meanwhile, Dr. Carol Shields at Wills Eye Institute was hurrying to see patients and close the clinic before the roads shut down.
But after evaluating Miniya, Dr. Shields had good news: Miniya was a perfect candidate for a new procedure only done at a handful of medical centers.
"It's very exciting for us. This is one of the most exciting things in retinoblastoma management," says Dr. Shields.
Wills Eye has teamed up with doctors at Jefferson University Hospital to perform Intra-Arterial Chemotherapy.
Neurosurgeon Dr. Pascal Jabbour threads a catheter through the groin to the carotid artery, then to a tiny artery going to the eye. Then for half an hour, Dr. Jabbour painstakingly injects tiny doses of chemo into the catheter.
"Here we can achieve what we want to do in a small dose because it goes directly to target the tumor," says Dr. Jabbour.
"It's really very rewarding to see we are making a difference in the outcome of those babies," he says.
After three treatments, Miniya is on the road to recovery.
Her eye is saved, and she will have some vision.
Dr. Shields says other families should follow the Rives. Always get a second opinion.
"You want to be perfectly comfortable with any medical decision regarding your care," she says.
Walter Rives says hearing a second opinion was worth the extra effort.
"No matter what the result would be as long as I can sleep well knowing I did all that I could," he notes.
There are risks involved with the procedure. However, the Jefferson-Wills team has had excellent results, doing hundreds of chemo treatments with very few complications.
They have saved lives, saved the child's eye in 70 to 80-percent of cases, and often saved the child's vision.
Dr. Shields believes Miniya will have a substantial part of her sight.
"She'll be able to identify a doll, or her parent, or a box of cheerios with that left eye," she says with a smile.
As for that second opinion, a lot of families don't think they have time, especially with cancer. But most cancer experts say you DO have time.
When should you get a second opinion and how do you get one? The American Heart Association offers guidance, so does Parents Magazine, and Medicare.gov.
Some hospitals offer online second opinion services, such as Johns Hopkins or the Cleveland Clinic.
