‘I don’t want to die, mom.’ Miami doctor accused in third child eye cancer lawsuit
It was spring 2016 when Yesenia Alvarenga said she first met another mother whose child had an eye cancer called retinoblastoma and was also a patient of Dr. Timothy Murray at Nicklaus Children’s Hospital in Miami.
At the hospital that day, the other mother told Alvarenga something startling about their sons’ doctor. “He messed up,” Alvarenga recalled the woman telling her. “You need a new ophthalmologist.”
A few months later, that woman’s child, Damian Creed, was dead, along with another child treated by Murray. Their retinoblastoma, a rare and aggressive eye cancer that usually occurs in kids younger than 5, had metastasized.
Last week, Alvarenga filed suit against Murray, Nicklaus Children’s and neuro-oncologist Ziad Khatib, alleging malpractice in the treatment of her son, Jayden, 6, whose treatment for metastasized cancer continues as he struggles to complete the first grade.
It was the third such suit filed by parents in similar cases. The previous lawsuits were filed last year and have not yet been resolved. All of the families share the same attorney.
Alvarenga, like the others, said she was advised by Murray not to remove her child’s cancerous eye and to opt for chemotherapy and localized laser treatments instead. In all three cases, the cancers then spread.
“We put our trust in these doctors and they used our kids like guinea pigs,” Alvarenga said. “It’s not fair to our kids.”
Murray has been treating the disease since 1991. It was around that time, he said, that the best practices for treating retinoblastoma shifted away from automatically removing the eye in favor of monitoring the eye while treating disease.
“You need to understand that if we feel strongly — myself and pretty much every other [medical] center — if we feel that we can keep the child alive and healthy and we can save that eye, that’s almost always what we do,” he said.
Alvarenga said she first took her son to the University of Miami’s Bascom Palmer Eye Institute, where doctors told her that Jayden, then 2, should have his eye removed before further treatment, according to the lawsuit that was filed on Nov. 18 in Miami-Dade County civil court. Murray used to work at Bascom Palmer before a falling out with a colleague who accused him of Medicare fraud. That suit was settled years later for a small sum, with no admission of wrongdoing.
In November 2015, when Alvarenga was 20, she took her son to Nicklaus Children’s for a second opinion, according to the lawsuit. She said she was assigned a team of doctors that included Murray, who is considered one of the foremost experts in treatment of retinoblastoma. Murray told her the eye could be salvaged, the lawsuit said.
When she made the decision to go with Nicklaus Children’s for her son’s treatment, Alvarenga said she hadn’t heard about Damian Creed, whose cancer had already spread to the areas around his brain through his optic nerve, and who would die a year later. Nor did she know about 5-year-old Salette Ruiz, another of Murray’s patients with retinoblastoma, who would die a few days after Damian, in November 2016.
Their deaths were unusual because fewer than 5% of the estimated 200 to 300 children diagnosed with retinoblastoma each year in the United States die from the disease.
By the time they had died, Murray had already removed Jayden’s eye. The boy had been through 10 months of chemotherapy and laser treatments prior to that, the lawsuit said.
At Bascom Palmer, doctors had advised removing the eye and chemotherapy to follow, based on the pathology of the eye, according to the lawsuit. But Murray said in an interview Monday that the approach to treatment was outmoded.
“What we do now is I give chemo first. The eye goes to the laboratory when it needs to be removed. Then we give a minimum of six to nine cycles of chemotherapy, regardless of the pathology,” Murray said.
Murray said the metastatic rate for that type of treatment is 1%, “so it’s incredibly good, but it’s not zero.”
A spokeswoman for Nicklaus Children’s said the hospital is unable to comment on pending litigation.
“As an advocate for all children, the hospital always puts the health and safety of patients first,” the spokeswoman said. “We are committed to offering the highest quality care. Due to this dedication to the relentless pursuit of clinical excellence, any concern regarding patient care is taken very seriously and thoroughly addressed.”
Khatib, also named in the suit, did not respond to requests for comment.
The lawsuit accused Murray and Khatib of failing to remove Jayden’s eye in time to prevent the spread of cancer and also not ordering systemic chemotherapy treatment after they removed it.
Murray, Khatib and the retinoblastoma team at Nicklaus Children’s “decided to provide no treatment to prevent metastasis despite knowing at the time of [Jayden’s eye removal] that both Damian and Salette had become terminally ill due to metastatic retinoblastoma,” the lawsuit claimed.
Jayden’s cancer metastasized to his bone marrow in May 2017, following weeks of pain and faulty medical advice, Alvarenga said.
“Unfortunately, but not surprisingly, the delay not only caused metastasis to Jayden’s bone marrow, but also caused metastasis to his brain,” the lawsuit claimed.
In September last year, Jayden was diagnosed with a brain tumor and admitted for surgery, according to the lawsuit. Alvarenga said the surgery to remove the tumor was the longest her son had ever been through — he left for surgery at 8 a.m. and came back at 9 p.m. that night.
“He was crying and saying, ‘I don’t want to die, mom,’ ” Alvarenga said. “That moment — I just can’t get it out of my head.”
Jayden is expected to survive the cancer that metastasized to his brain and bones, Alvarenga said, but doctors told her he is going to have permanent brain damage.
“He won’t grow much because of how much radiation he got, and he’ll probably develop late,” Alvarenga said. “I am almost sure he is going to fail first grade. He’s always super tired. It’s all just draining him.”
