Diagnosis: Retinoblastoma
Last September, Diana and her husband Bob were thrilled to welcome their second daughter, Holly, into the world. Holly was born completely healthy, but Diana and Bob were anxious to have Holly’s eyes checked. Holly’s three year old sister, Hannah, had been diagnosed with congenital anterior polar cataracts, a genetic condition that could possibly affect the new baby as well. They were extremely relieved when the hospital pediatrician examined Holly’s eyes after birth and told them they were completely normal, no sign of cataract.
Over the next few months Holly developed normally and was a very happy baby. Both Diana and Bob noticed that Holly’s eyes did not track together all of the time but were not alarmed as wandering eyes are common in infants. Over time, however, Holly’s left eye started to drift outward more frequently and hadn’t corrected itself. Diana mentioned this to her pediatrician Dr Mark Acker at their 4 month wellness check. He too noticed the drift and, although her red eye reflex was normal, he suggested they see a pediatric ophthalmologist to have her eyes thoroughly examined.
Two days later, Diana brought Holly to see the ophthalmologist. After a thorough exam, Diana was told the unbelievable news that Holly had bilateral retinoblastoma, cancer of the eyes. Holly had tumors behind both of her eyes and Diana needed to take her immediately to Boston Children’s Hospital to see Dr Efren Gonzalez, Director of Ocular Oncology. Diana says that she was in shock. She was expecting patching therapy to straighten the eye, not cancer.
Diana and Bob rushed to Boston Children’s Hospital and learned that Holly did in fact have bilateral retinoblastoma. She had multiple tumors in both of her eyes. The left eye had the largest tumor and it wasn’t until Holly’s first EUA (exam under anesthesia) that they determined it was grade D. (Grade E would require enucleation, removal of the eye) Her right eye had several tumors and was graded B. While under anesthesia, they placed a central line in her chest so that they could start her on a systemic chemotherapy regimen. They had met with Dr Jennifer Mack attending physician of pediatric oncology and Dr Riaz Gilliani pediatric oncology fellow through Dana Farber Cancer Institute. They were hospitalized for several days for Holly’s first round of chemotherapy as well as for all the training that her parents would need to take care of her at home.
After Holly’s first round of chemotherapy, the largest tumor shrunk significantly, decreasing in size by 50%. All of the other tumors diminished as well. Since then she has gone through two additional rounds of chemotherapy. This was done at Dana Farber Cancer Institute’s Jimmy Fund Clinic. Holly is seen now in the outpatient setting by Dr Natalie Collins pediatric oncology physician and Dr Wallace Bourgeois pediatric oncology fellow. Just recently, Holly had an exam under anesthesia to see how the tumors have been responding. Her tumors were treated with both cryotherapy and laser therapy. Diana and Bob were told that Holly needs at least one more round of chemotherapy. Every month she will have EUAs to determine what will happen next. They are hoping the chemotherapy will end soon.
Through all of her treatment, Holly has remained the happy baby she was before diagnosis. Diana and Bob are incredibly grateful that they were able to get Holly the care she needed in time. They are hopeful that she will continue to respond well to the chemotherapy and that they will be able to save her eyes. They report being thankful to be so close to Boston Children’s hospital and Dana Farber. All of the staff; doctors, nurses, social workers, and religious personnel have all been wonderful. “We know we are in good hands”.
Looking back, Diana noticed a glow on occasion under a certain light through the naked eye. Family has since come forward and shown pictures that showed a glow with the flash that was taken prior to the diagnosis. At the time, she did not even recognize that the Glow meant anything or was even there. She had no idea that this silent sign was alerting them to the cancer growing in Holly’s eyes. Diana wishes that she had known about the Glow and she is now determined to share her story in the hopes of educating another parent who may be missing this very important sign.
UPDATE –
Just over three years ago, Know the Glow released a story about Holly Rodrigues. Holly had recently been diagnosed with bilateral retinoblastoma, after her parents noticed a drift in her eyes. In the months after our story was posted, it appeared that her tumors were reacting well to the treatment. However, once the chemo was halted, Holly’s tumors began to rapidly grow in both of her eyes.
In Holly’s left eye, the tumor grew dangerously close to the optic nerve which meant the cancer was at risk of expanding beyond the eye. Holly’s doctors decided that the best course of action was to enucleate Holly’s left eye. Neither Holly’s doctors nor parents were comfortable with continuing chemotherapy knowing the aggressive nature of the tumors in this eye which could be threatening her life.
Holly did well with the surgery however the pathology of the removed eye showed that there was a slight risk that her cancer had traveled beyond the eye. The doctors suggested she receive another four rounds of systemic chemotherapy in the hopes of preventing any cancer from developing in other parts of her body. These extra rounds also helped Holly’s right eye to stop any growth. Holly also had a laser treatment to this right eye to stop the tumor’s development. In the two years since these final treatments, Holly’s tumors have remained stable in this eye.
Holly is now 3 1/2 years old. She continues to be monitored monthly by Dr. Gonzalez at Boston Children’s to ensure there is no new growth of the tumors in her right eye. She will continue with these appointments until she turns five, when the need for her visits will be less frequent. Now that she is older, her monthly exams under anesthesia have alternated with in-office visits. Holly continues to be monitored by oncology at Dana Farber’s Jimmy Fund Clinic and has MRIs every six months.
Holly is a very active, happy little girl. Her mother, Diana, says that she has adjusted to her prosthetic beautifully. Most people can’t even tell the difference, thanks to the wonderful work of Jarhling Prosthetics. Holly loves playing with her older sister, Hannah. They love to spin, sing and dance to all of their favorite Disney movies. Their laughter fills the home with joy.
For Diana, the years of treatment seem to be a distant memory. However she is reminded every so often when Holly’s glow appears in the right eye of her flash photos or on her baby monitor. As the inactive tumors that remain still reflect this early sign of her cancer. Every time she sees this Glow she is filled with gratitude for the amazing care she received under Dr. Gonzalez at Boston Children’s Hospital and Dr. Bourgeois at the Jimmy Fund Clinic. She wants to share Holly’s story to assure families who are currently in the middle of their own RB battle that there is a happy, full life waiting for their child beyond their cancer.