Eye to eye . . .
"It was a day we'll never forget."
Jeff and Angel Simpson recently tried to figure out how many trips they’ve made from their North Georgia home to Emory Eye Center since their first visit here. Their best guess: between 75 and 100.
For both the Simpson family and their Emory ophthalmologist, Baker Hubbard, however, the past eight years have been less a journey of miles than a journey of steps – painstaking, difficult steps, yet hopeful ones.
Jeff recalls that when Hubbard diagnosed the Simpsons’ 11-month-old daughter Victoria (Tori) with retinoblastoma (RB), “I went numb on the word cancer. It was a day we’ll never forget.”
Two weeks later, Tori had surgery for enucleation – the removal of her affected eye. Because her body rejected the necessary orbital implant, numerous visits and other surgeries followed. Tori emerged cancer-free, with normal vision in one eye and a beautifully crafted prosthesis in the other.
When Tori was first diagnosed, accurate genetic testing was not routinely available as it is today, but the conditions of Tori’s case suggested that her RB was the non-hereditary type. As Tori recovered, the Simpsons planned to have a second child. When their son Landen was born, they proudly brought him along on one of Tori’s follow-up visits. Hubbard offered to examine the baby’s eyes – and it became another day etched on the parents’ memory, as well as on his. A rare exception to RB’s usual patterns, the family’s retinoblastoma was the hereditary kind after all.
“It was like starting all over again, but worse, because Landen was so young,” Jeff says. “Our tiny new child had to fight for his life, and there was nothing I could do to help him, other than to provide him with the best doctors possible.”
With perfect timing, translational research stepped in to help: Hubbard, along with oncologist Tom Olson from the Aflac Cancer Center at Egleston, enrolled Landon in a clinical trial sponsored by the National Cancer Institute, which was treating RB with different combinations and dosages of chemotherapy agents to try to minimize side effects.
Initially Landen’s RB was unilateral, but soon tumors became apparent in both eyes. At three weeks old, Landon started chemotherapy; later Hubbard performed laser surgery to treat the tumors. Within a year, all the efforts had succeeded. Both eyes were saved, the vision in Landen’s right eye was estimated to be near normal, and Hubbard had eradicated the left eye’s tumor – but central vision had to be sacrificed to save the eye and its peripheral vision.
“Dr. Hubbard is our hero,” Angel Simpson says, “and there’s such a bond of trust between us. With his help and a blessing from God, our kids got a second chance at life.”
Today Landen and Tori are both healthy, fun-loving children. Tori, now 8, is a master hula-hooper with several beauty pageant wins to her credit. “A lot of her friends don’t even know she has a prosthetic eye,” Jeff says, “and she often receives compliments on how pretty her eyes are.”
Other good news, Hubbard reports, is that RB treatment may be on the cusp of dramatic advances, particularly in delivering drugs to the eye more effectively and with milder side effects, via microneedles.
Parents of RB children need good news, and Hubbard offers them as much as he possibly can. “Parents are frightened and vulnerable,” he says. “Here’s their child, who means more to them than anything, stricken with cancer that threatens the child’s life and could leave their child blind. But in a majority of cases, that child is going to do well. Children have a strong ability to cope, to adapt, and to overcome obstacles. Difficulties that terrify their parents often do not even faze the child.”
For Jeff, Hubbard’s approach works: “When you have a question, Dr. Hubbard has an answer. And he’s not just giving you a few words; he wants to educate you. It gives you peace, the knowledge that he shares.”
The learning, Hubbard says, is a two-way street. “It’s humbling to watch a family overcome such a difficult set of circumstances. It teaches me so much about persistence and faith. As a physician, going through this with more and more families, you learn more ways to help them. You learn that with the support of so many others, you can get the family through it.”
Every year, the Simpsons attend Emory Eye’s heartwarming RB picnic – not only to enjoy all the activities, but to meet other RB families, sharing stories and words of hope. As cancer survivors, they also participate in the American Cancer Society’s Relay for Life. “Our experience has made us want to give back,” Jeff says.
“And we’ve learned that every cloud has a silver lining. If we had thought that Tori’s RB was the hereditary type, we would not have planned to have a second child. We wouldn’t have had our wonderful son.”
Step by difficult step, Jeff, Angel, Tori and Landen have come to see that every day together is a day to cherish always. As Jeff puts it, “We learned to love like there’s no tomorrow.”