Diagnosis: Bilateral Retinoblastoma
When your infant child is newly diagnosed with retinoblastoma, a parent can feel alone and as if they are in a vacuum of uncertainty. Laura Bermejo and her husband Víctor Vázquez found themselves in this situation when their 3 ½-month-old son was diagnosed with bilateral retinoblastoma. Laura, now a devoted member of Asociación Española de Retinoblastoma (AER), sat down to speak with the KTG team on behalf of AER and its President, Lydia Galante Lamas so that Megan and Helene could learn more about this incredible organization.
Laura told us that she did not even have to take a photo of her baby to see the glow because the leukocoria was so pronounced with the bathroom light. She told her husband of her concerns and they took him to a pediatrician to make the regular infant check-ups, who immediately sent them to a pediatric ophthalmologist. The ophthalmologist saw multiple masses in both eyes and sent them directly to La Paz University Hospital in Madrid. La Paz is one of the four hospitals that treat RB in Spain, with the others located in Barcelona, Valencia, and Seville. The Bermejos soon found themselves in the very capable hands of Dr. Jesus Peralta. Suddenly, within one week’s time, their infant was scheduled for surgery to receive his port and have an MRI performed on his head to confirm that the tumors had not spread. A week later, he received his first of four rounds of systemic chemotherapy. While the typical protocol for RB in Spain includes Intra-arterial chemotherapy (IAC) it is not recommended for patients under six months of age, so they opted for systemic chemotherapy. Dr. Peralta was able to save sight in Victor’s left eye, but he is completely blind in his right eye (although the Doctor believes he has peripheral vision). Fortunately, he is now 20 months old and is a happy and active toddler! You would never know that he cannot see out of one eye.
During this harrowing experience, Laura met with the therapists at the hospital to help her process her son’s retinoblastoma. They reassured her that her feelings of being frightened and disoriented were expected under the circumstances. However, it was when she was introduced to AER and she and her husband were able to meet other families with retinoblastoma that she found herself truly healing. The family connections there were the most helpful in showing Laura and her husband ways to cope and heal from their whirlwind medical ordeal. When she met Cristina Martínez. She urged them to take the next step and attend an AER meeting. Laura was hesitant to attend, fearing it was too soon and she would not be ready for such interactions, but she is extremely grateful that she went! The parents there answered their questions like a family sharing personal information. She could not believe how many families there were with retinoblastoma, and it was so inspiring to see children living full lives after their RB diagnosis.
This gift of support that AER provides to so many families is the reason Laura appreciates what KTG does by raising awareness on the detection side of the equation! She was shocked to learn of the many conditions leukocoria can first indicate and explained to Megan and Helene that AER finds many ways to raise funds for the hospital and spread awareness. One project that the AER chapter in Barcelona is spearheading is the development of a storybook about a young boy whose RB is detected with a flash photo. Dr. Jaume Català has contributed his expertise to briefly explain RB to the readers. When the book is completed they hope it will raise funds for RB awareness.
AER has a variety of ways to raise funds and awareness. Whether it is having a market to sell goods, organizing runs, or having festivals, AER has dozens of ongoing creative programs. Laura has been thrilled with the support from their local communities and their families with retinoblastoma. When the school where Laura teaches 4th grade learned of her son’s condition they too decided to raise funds to support AER in honor of her son. Her sister, who teaches at a local high school, did the same and held a market to sell items to raise funds for AER. There is love and support all around Laura and her family and the many members of AER. Twenty years ago, these families suffered alone, but having AER as a source of comfort and support is vital. Laura is convinced that she and her husband could not have managed through their ordeal as well as they did without the support of the amazing organization, AER.
To learn more about their work, follow the link below and watch for updates from us on the storybook too, once it’s complete! In the meantime, we look forward to partnering with AER to build awareness in Spain and hope to find more ways to work together on the front end to find the families they will ultimately support post-diagnosis in Spain!