Holly’s Glow Story

Posted on 2019-06-12

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 be inoculation; 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 one more round of chemotherapy. Every month she will have EUAs to determine what will happen next. They are hoping the chemotherapy will stop 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.

Treatment for Holly is very expensive.  Diana’s sister-in-law and brother have set up a GoFundMe campaign to help the family cover some of the expense.  If you would like to help Holly and her family through this difficult time, please go to https://ie.gofundme.com/baby-holly039s-medical-expenses.