Alonzo’s Glow Story

Diagnosis: Unilateral Retinoblastoma

When Andreina Ramos received her son Alonzo’s Retinoblastoma diagnosis, she was both devastated and extremely caught off guard.  Neither she nor her husband had any cancer in their family histories. 

When Alonzo was just two years old, his mother noticed a strange reflection in his eye in the dim lighting during a power outage. She then took to the internet to search for information about the odd reflection she had witnessed in her son’s eye but found nothing suggesting that it could be related to childhood cancer. A few weeks later, after noticing the strange reflection again, Andreina took her son to an ophthalmologist in Barquisimeto, Venezuela, where they were first informed of the possibility of Retinoblastoma, cancer of the eye. The referring doctor sent them immediately to Dr. Livia Romero, one of the few doctors in the country to treat this disease, and on December 12th, 2020, two-and-a-half year old Alonzo was officially diagnosed with unilateral retinoblastoma in his left eye.

At the beginning of his treatment, Alonzo endured five cycles of chemotherapy, neither of which seemed to impact his tumor. Following chemotherapy, Alonzo received two cycles of laser therapy, and although it was successful in reducing the size of his tumor, it did not make the progress that Dr. Romero had expected. It was then that Andreina and her husband had to make the impossible decision on whether to continue with another treatment, or to go forward with the doctor’s recommendation of enucleation, removal of the eye. Ultimately, after an extremely difficult decision, Andreina and her husband chose enucleation, to ensure that the cancer was eradicated and to save Alonzo’s life.

On the day of the surgery, Andreina was both nervous and so very sad. Once the operation was completed though, she remembers vividly the moment Dr. Romero spoke the words “Your son is cancer free!” She was elated knowing that the cancer was gone, and was beyond grateful for how supportive and amazing Dr. Romero was in every aspect of the process. The day after the operation, Alonzo was already back to eating and playing like normal, and no further treatment was required. Today, despite Andreina’s ongoing concerns about prosthetic complications and replacements over the long term, Alonzo is doing extremely well with his new eye.

After all was said and done, Andreina was disturbed by the lack of information and awareness available in Venezuela about the dangers of finding the glow and especially the lack of information about Retinoblastoma.  This led her to create an amazing Instagram page @retinoblastomaVe in order to share all types of information about retinoblastoma in Venezuela and she hopes it is shared far beyond her country’s borders. She hopes to continue spreading awareness and sharing stories about families in Venezuela, like her own, who have gone through the process and whose children have gone on to live happy and beautiful lives after their battle with RB.  She looks forward to working alongside KnowTheGlow as they begin their campaign of awareness in Venezuela and hopes to help share the translations and materials alongside us as we work together to help educate the families in Venezuela about the glow and the conditions it can indicate.  We know that with parents like Andreina and her husband by our side we will together be able to find and guide to care many more Venezuelan children in time.