Damian Creed and Salette Ruiz never met, though their short lives followed remarkably similar and tragic paths.
Both children were diagnosed at the age of 2 with an advanced stage of a rare and aggressive eye cancer called retinoblastoma that usually occurs in kids younger than 5. Both children received treatment from the same eye cancer specialist, Dr. Timothy Murray, at the same hospital, Nicklaus Children's in Miami. And both children died — on the same week in November 2016 — after receiving similar chemotherapy and other treatments that failed to stop the cancer from spreading to their brains and central nervous systems.
Damian died first, at the age of 4. Salette died six days later, at the age of 5. Their deaths were unusual because fewer than 5 percent of the estimated 200 to 300 children diagnosed with retinoblastoma each year in the United States die from the disease.
Damian's and Salette's parents said they trusted Murray, who is considered one of the foremost experts in treatment of the disease, and others at Nicklaus Children's, including Dr. Ziad Khatib, a neuro-oncologist who took over the children's medical care after their cancer metastasized.
"I always believed she was in the best hands and my daughter was going to be saved," said Sally Simon, Salette's mother, "because they always gave me options. They never said, 'This is so bad that there’s no solution.' "
Said Sarah Hancock, Damian's mother: "Never for a second did I think he might die of this. Never. Those risks weren’t even discussed. That never came up. Like, that wasn’t even an option."
Now the children’s parents are suing Murray, Khatib and Nicklaus Children’s for medical malpractice in Miami-Dade Circuit Court, alleging that the doctors failed to follow standard medical procedures for treating advanced retinoblastoma, which often includes surgical removal of the affected eye to prevent the cancer from spreading, and that the hospital neglected to supervise the physicians' work.
Murray, an eye surgeon who left the University of Miami's Bascom Palmer Eye Institute in 2012 following a bitter feud with a colleague who accused him of Medicare fraud, did not respond to requests for comment. Jeff Marcus, Murray's attorney, said in a written statement that the eye surgeon's work over a 25-year career has led to some of the most significant advances in the treatment of retinoblastoma.
"Of the more than 370 retinoblastoma patients he has treated, these are the first and only two who have been lost to advanced metastatic retinoblastoma, well below the national mortality rate from this disease," Marcus said. "Dr. Murray is devastated by the loss of these two children and grieves for their families. However, the facts will show that these children received outstanding medical care — the same level of care Dr. Murray has provided to thousands of patients throughout his career."
Khatib, the neuro-oncologist, could not be reached for comment. Jennifer Caminas, a spokeswoman for Nicklaus Children's, issued a written statement saying that the hospital does not comment on pending litigation but continues to provide the best possible care for children.
"As an advocate for all children, the hospital always puts the health and safety of patients first," Caminas 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."
Damian and Salette were first diagnosed with an advanced stage of retinoblastoma by Murray, according to the children's parents. Salette was referred to Nicklaus Children's by the family pediatrician in Miami after her parents began to notice a reflection in the girl's left eye that Simon said resembled a cat's eye.
Jorge Ruiz, Salette's father, said in Spanish that Murray diagnosed the girl in November 2013 with "the most serious retinoblastoma he'd seen in his career."
Had Murray removed Salette's eye sooner, Ruiz believes, the cancer would not have spread to her brain and spinal cord fluid.
"If he sees her Friday and Monday we’re removing her eye, Salette would not be dead and we wouldn’t be here," Ruiz said. "But he started to invent things, doing chemotherapy, radiation, and that opens a path for the cancerous cells to spread. If it’s the most aggressive you’ve ever seen, then remove the eye."
The parents of the other child, Damian, discovered something was wrong with their son's left eye when the pupil became dilated and stayed that way. Hancock said she took her son to Physician's Regional Hospital near their home in Naples and a CT scan revealed a tumor in the boy's eye.
Hancock said she and her son were immediately flown by helicopter to Nicklaus Children's in Miami, where an emergency room doctor first told her he suspected Damian had retinoblastoma. The following day, she said, Damian went to visit Murray at his office on Red Road.
Murray later examined Damian under anesthesia and confirmed the boy had retinoblastoma and a detached retina, which would have affected the child's ability to see.
"He said it was really bad," Hancock said. "He said he didn’t think he’d be able to save the eye, 'But I’d hate to remove a 2-year-old’s eye before we try to do something, and we’re doing this intra-arterial chemotherapy here now. It’s a fairly new program, and I want to see how he reacts to it.' I said 'OK.' He said, 'I want to try that before we remove the eye.' "
Intra-arterial chemotherapy is a more recent treatment for retinoblastoma that delivers concentrated medication to the eye tumor without excessive toxic side effects that are more common with systemic chemotherapy.
Damian began the first of seven rounds of the therapy a few days after Murray diagnosed him with advanced retinoblastoma, and Murray also performed laser treatments to reduce the size of the tumor, the lawsuit says.
Hancock said she and Damian's father, Ron Creed, feared that their son would lose his eye, but said that they were never asked to choose between saving Damian's life or preserving his damaged eye.
Hancock said she began to research retinoblastoma and found hope that Murray would not only save the eye but also restore her son's vision. The doctor dismissed that idea, she said.
"I ask him, and he says, 'No. His eye is pretty diseased. … The retina is shredded, there’s no chance of reattaching this and getting vision.' I said, 'Then why are we saving a dead eye? If the cancer is contained to his eye, we remove the eye, the cancer is gone.' … He said, 'No, no, no, no. … We open up a whole other can of worms when we remove a child’s eye so young. The socket can’t develop properly. It stops growing. There are a lot of issues that go with that. It’s a slippery slope,' he says. 'We have to balance. So we wait as long as we can to remove the eye to keep the socket safe and keep it healthy.' "
Salette's parents said Murray pitched a similar treatment plan for their daughter after her diagnosis, though he held out the possibility of surgically removing her eye, a procedure called enucleation.
"He said, 'Let’s try one, and then depending on how she responds, I’ll see if we have to enucleate,' " Simon said.
After the first course of intra-arterial chemotherapy, Jorge Ruiz said, Murray recommended more.
"He must have seen something positive at that time or he wouldn’t have said, 'Let's do three more,' " Ruiz said. "He always gave us solutions, that he had tools to treat it."
But by the fifth course of the therapy, Simon said, Salette's arteries could no longer tolerate the medication, and doctors put her on systemic chemotherapy. From March to December 2014, Ruiz said, Salette received systemic chemotherapy that caused her to lose her hair and some weight, but not her ebullient personality.
By April 2015, he said, Salette returned for a follow-up examination with Murray, and her eye had swollen and was bulging out of the socket.
"When he examined her he called it a dead eye," Simon said. "He said, 'Maybe we should enucleate' and that he would operate the following Friday. I said but up until now you said the bad eye is stable, and now you’re telling me she has to have her eye taken out."
Murray removed Salette's left eye on May 8, 2015, and then delivered bad news to her parents.
"When the operation was over, Dr. Murray came to tell me that the operation was great, that everything went well," Simon said, "but that … where he cut the optic nerve, there were cancerous cells" — an indication that the cancer had already spread beyond Salette's eye.
About two weeks after Murray removed Salette's eye, a pathology report confirmed that the cancer had spread to her optic nerve.
Damian's parents did not learn that his cancer had spread until much later in his treatment.
After completing the chemotherapy treatments in November 2014, Creed said, Murray declared Damian "cancer free."
By June 2015, though, Damian was having severe pain in his left eye again, and the eyeball later swelled to twice its normal size, protruding out of the socket, Creed said.
In July 2015, Murray surgically removed Damian's left eye. After the surgery, Hancock said Murray told them, "We got it all. We’re good."
But during a follow-up visit in September 2015, she said, an MRI revealed the tumor had metastasized through the optic nerve and reached the brain.
"There was a mass about a quarter of his brain," Ron Creed said. "My son’s brain was covered in cancer. It was just a giant tumor."
More than two months after Damian's eye was removed, they said, he began receiving systemic chemotherapy. The treatments were hard on Damian, who began to lose weight and hair, run fevers and later developed sepsis, a blood infection, due to his weakened immune system.
"He went from being healthy, colorful, little chubby cheeks. His face started sinking in. His arm started losing skin hair," Ron Creed said.
Damian's parents said they believed in Khatib. "He was good. It was the first time I felt he was going to take care of us," Hancock said. "He was like, 'It spread. It's my game, and I'm going to do everything I can to take care of your child.' "
The chemotherapy did not reduce the tumor, Damian's parents said. Khatib referred them for proton beam therapy at the University of Florida Health Proton Therapy Institute in Jacksonville.
After six weeks of proton therapy, Hancock said, the family returned to Nicklaus Children's, where an MRI showed Damian's brain tumor had receded. Khatib told the family he would still need to do maintenance chemotherapy to prevent a recurrence. But by March 2016, the cancer had returned and spread to the spinal fluid.
The family's last best hope was a stem cell transplant, Hancock said. But that failed, too, and five months after the stem cell bone marrow transplant, Damian died at Nicklaus Children's, where he had been receiving palliative care.
"I had to leave that hospital without my baby," Hancock said. "I had to leave him in that morgue and drive home without him. ... They killed my kid."
Like Damian, Salette's short life also was defined by long hospital stays, and repeated chemotherapy, radiation, proton beam treatments and a stem cell bone marrow transplant. All failed to stop her cancer from spreading.
The legal complaint filed by her parents notes that she endured excruciating pain after her eye had been removed, including a perforated intestine, pancreatitis, urinary tract infections, viral pneumonia and severe vomiting — effects, Simon said, of the chemotherapy and other treatments.
Her last holiday was Halloween, and with little that doctors could do to help, Simon said she took her little girl home dressed as the character Elsa from Salette's favorite movie, "Frozen."
"She wanted to get in her costume, that she had gone to buy with me," Simon said. "We dressed her how she wanted to be dressed."
A week later, Salette was admitted to the pediatric intensive care unit at Nicklaus Children's. Her cancer had spread from her left eye to her right optic nerve and spine, and around her brain and spinal cord, the legal complaint says. Salette was placed on a ventilator and doctors declared her brain dead the day before she died on Nov. 11, 2016.
"I wasn’t going to keep my daughter like that knowing there was nothing to do," Simon said.
Peer reviews conducted by doctors at Nicklaus Children's following Damian and Salette's deaths — and filed as part of Damian's lawsuit — appear to concur with the parents' allegations that Murray did not follow accepted medical procedure for treating advanced retinoblastoma and that removing the affected eye may have prevented the cancer from spreading.
In the review, a Nicklaus Children's physician whose name was redacted by hospital administrators found "significant deviations from the standard of care by Dr. Timothy Murray" in the treatment of Damian's cancer.
"Allowing a child to progress from treated intraocular retinoblastoma to ocular tumor recurrence and then subsequently optic nerve extension and even central nervous system extension (while under observation) is not considered to be within the standard of care at a modern medical center," the review says.
The reviewing physician also found that Murray did not have an adequate view of Damian's eye because of the tumor, the detached retina and hemorrhaging in the eyeball — creating what the report called "a risky clinical situation" because the tumor can recur or even metastasize without the ophthalmologist being aware that the cancer had spread.
The review of Salette's care also found fault with Murray's treatment, noting that the vision in her affected eye would never be restored and that after the first examination the doctor should have considered removing the girl's eye to save her life.
"With this presentation the traditional treatment of enucleation to preserve life is still frequently recommended by many experts," the report says.
The review also notes that after Salette's cancerous eye was removed in May 2015, doctors should have restarted chemotherapy immediately. "Why recommend further observation? It probably would not have made a difference at that point anyway and the battle was really lost by then but that would have been the appropriate thing to do," the report says.
After Damian's death, his parents wanted to memorialize their son by taking toys to other children with cancer at hospital oncology wards in South Florida. They also started a Facebook page, called Team Damian, with pictures and videos of Damian. Their goal is to create a nonprofit that will raise money for children with cancer.
Hancock said they have visited 11 hospitals in South Florida so far. On Damian's birthday in March, she said, the nonprofit hosted a party at Nicklaus Children's, with cupcakes and bags full of toys, hats, blankets and other items for the children in the oncology unit.
"We’ve been to Nicklaus several times since he died," Hancock said. "It’s hard."
But Creed said it feels good to bring joy to parents who are living through the same experience.
"It made my son feel good to get something like that, which made me feel good," he said. "So when these parents are in there and they get that bag, I know their kid feels happy when they get these toys, and it makes the parents feel a little bit happier."