Lyla’s childhood cancer journey began with a picture.
We wouldn’t be here if it wasn’t for Lyla’s retinoblastoma diagnosis at the age of 18 months. Lyla was diagnosed with one of the rarest forms of childhood cancer, retinoblastoma, which is cancer of the eye. This cancer affects approximately 300 kids in the United States all of whom are under the age of 6. One of the only ways to find out if you have this cancer is a yellow reflection in the eye, that is only visible through flash photography. A yellow golden ring appeared in a random picture I took of Lyla, and a nagging voice in my head told me to go get it checked out.
When I was pregnant in Florida, I saw a poster about kids with 2 different colored eyes and the doctor told me, “Oh don't worry about it, it's super rare, it’ll never happen to you.” Let this be a reminder, if you ever have come across something that you can't stop thinking about, act on it. The universe is delivering you the signs even if you're too distracted to realize them.
That’s just one of the reasons why we believe art can save an eye or a life.
After a visit with her pediatrician, Lyla was immediately sent to Boston Children's Hospital where they found 29 tumors growing and reproducing in her right eye. Without knowing if it had spread to the brain, we made the decision to remove the eye, rather than undergo 6 months of chemo and probably still have to remove it surgically. Rapid decisions and actions must be taken, which is typical for all retinoblastoma patients. In 7 days I went from thinking I had a healthy baby to removing an organ from her face. Death is not uncommon in retinoblastoma patients because if found too late, it will spread to the brain because that is the only area left to go. If I waited a month longer to get Lyla’s eyes checked, she wouldn't be here .
Outside the USA the survival rate is approximately 20%. There are approximately 4 doctors in the USA who at major hospitals can perform this procedure and I was lucky to have one 45 minutes away. Lyla and I wish to thank my medical team at Boston Children's Hospital. Specifically Dr. Jose Efren Gonzalez Monroy, Director of the Ocular Oncology Center and the Director of the Pediatric Retina Program, who was also Lyla's surgeon. Big thank you to Jahrling Ocular Prosthetics for making the most beautiful artistically and patiently crafted green/gold eye, the Jimmy Fund Clinic for follow up preventative cancer examinations.
There is an incredible lack of education about this deadly disease that affects about 400 children each year. Many children diagnosed with retinoblastoma will lose one or both eyes to cancer. Living with a lifelong vision impairment and a life with prosthetic eye(s). Prosthetic eyes are not always covered by insurance. So we’ve combined the medical, the science, and the arts all together to fight this disease. With our team of artists we are painting with a purpose in order to get awareness and eyes on those who need eyes on them the most.
We are making it impossible to turn a blind eye to retinoblastoma.
Prosthetic eyes cost anywhere between $2700-$8000. This custom, freehand, paint job for prosthetic eyes is not always covered by insurance. The eyes are very realistic and about the size of a quarter. A child will go through about 5-8 eyes by the time they are an adult. My daughter Lyla was also diagnosed with autism last year. She is nonverbal. Many children face disabilities beyond just their vision after retinoblastoma. We should allow all children to be seen and supported. A financial burden of cancer on top of living with a vision impairment shouldn’t be a problem for families to worry about in their child’s recovery.
