Ava was only 2 months old when she was diagnosed with retinoblastoma. She had a cross eye, which we, as new parents, were assured was normal for newborns. She wouldn’t not make eye contact yet and was frequently looking toward lights. At her 2 month old pediatrician appointment, she began having rapid eye movements that were abnormal and we were referred to an eye specialist. Within a week or so, Ava had been diagnosed with eye cancer and we were off to Philadelphia (from Virginia) to see the leading provider for this cancer.
Ava received systemic chemotherapy for 6 months. During that time, she also had tumors in both of her eyes treated with laser and cryotherapy. After only 2 months of stability, Ava had recurrence of her tumor growth and then had to receive intra arterial chemotherapy delivered by a neurosurgeon via a specialized procedure that gave chemo into her ophthalmic artery. In between treating both of her eyes with this, she had some chemo injected directly into the vitreous fluid of her eye. She routinely received MRIs and Eye Exams under anesthesia to evaluate tumor growth and to ensure that cancer had no spread into the brain.
Ava’s diagnosis and treatment have made us realize how precious life is and that we should value every minute that we have in this life. We have met so many amazing people and families that have helped us along the way. We also have realized just how amazing kids are!
Raifeartaigh was diagnosed with hereditary retinoblastoma on 02/28/2024. We were out to eat on 02/25/2024 and I saw the spot behind his pupil and immediately knew what it was. We left the restaurant and went to the ER for confirmation. Our son was in to see an ophthalmologist on 02/26. He was in Miami on 02/28 and got formally diagnosed and he lost his left eye on 03/01. Currently going through chemo for tumors in his other eye.
He has had an eye removal and chemo. For every treatment and exam, he is sedated. There are many struggles in this ever-evolving situation.
Every aspect of life has changed. We have emotional struggles and financial struggles. We try to ensure we stay as healthy as we can ourselves, remembering to eat, sleepless nights, and overwhelming days, and second-guessing our decisions in regards to healthcare decisions.
Kiya was diagnosed with retinoblastoma at 8 months old. I noticed a white glow in her eye, and it stopped tracking. She’s had her right eye removed so is blind in that eye.
She’s feisty, and strong which she needs for this journey!
Ayla is a happy girl who loves to color, paint and go to gymnastics. She is involved with Children’s Ballet of San Antonio along with her brother Jaylen. She loves unicorns, LOL dolls, princesses and Gabby’s Doll House.
Ayla was diagnosed with bilateral retinoblastoma at 4 weeks old. Her dad and brother had the RB1 gene so we had Ayla tested to determine if she had the gene as well. Tests showed that she does have the RB1 gene. She is happy wearing her glittery pink prosthetic eye.
She had laser treatment and IAC (a type of chemo) and if recall correctly, she also had cryotherapy. We struggled while she was undergoing treatments but we are okay now. Ayla and Jaylen are also Kodas (Kids of Deaf Adults). They speak ASL frequently even though they can hear.
Ryder is the happiest little boy, he laughs and smiles all the time and LOVES flirting with his nurses. He enjoys being stimulated with different books and toys and is starting to move more and more. He truly is one of the sweetest little boys.
Ryder was diagnosed with Retinoblastoma on September 26th, 2022. During a move, a friend that was babysitting Ryder snapped a photo in dim light with a flash on that happened to show a strange reflection in his eye. This friend had seen this 20 years prior and urged us to have him looked at by his pediatrician. He was diagnosed 2 days later.
Ryder is currently going through Intra-Arterial Chemotherapy, we have to travel from Montana to Denver, Colorado for treatment and exams every 2 weeks.
Cancer has created many challenges in our lives -my husband has been trying to work more and more to help medical costs and we have to travel frequently. Ryder also has impaired vision in his right eye.
You truly would never know Ryder is fighting something so serious, He is so strong and happy all the time.
Hudson is super silly! He is starting to let his personality really shine through. We didn’t hear his laugh for the longest time, and now his belly laugh makes us grin ear to ear each time. Hudson loves to play with mama and dada, but the tickles are what he squeals for! Hudson loves all things construction, especially the vehicles. He has every truck imaginable, PJs with excavators, and his favorite show is even called Trash Truck.
Hudson was diagnosed with Retinoblastoma in 2020 when he was just 6 months old. His eyes weren’t 100% aligned and I fought hard as his advocate. It was not noticeable to anyone but myself, but I felt something wasn’t right. I brought him to the pediatrician who said everything was fine, but I brought him back 1 week later. The doctor put in a referral for an ophthalmologist, but the appointment was months out. I brought him in a third time a few days later, and that’s when the doctor noticed something with the light of his eyes. She put in an emergency appointment the next day. Two days later he was starting his first chemo treatment.
Since then, he has undergone 7 rounds of chemotherapy, 20+ exams under anesthesia, and laser treatments. Since Hudson was still immunocompromised, when he tested positive for Covid in January of this year, it hit him hard. Hudson had a collapsed lung from all of the damage. Just recently, Hudson became very sick. After a week’s stay in the PICU at Riley Children’s Hospital, Hudson was diagnosed with RSV, Rhinovirus, Bronchiolitis, AND Pneumonia. All of these things would not typically put a child in the hospital on oxygen, but they did for our special warrior.
Hudson does not have vision in his left eye, as the tumor takes up the entire space. He may have some peripheral vision, but not much. He also has a prescription in his remaining sighted eye. Hudson has to wear protective glasses in order to keep his right eye safe from injury. Hudson does not have any depth perception and regularly falls as a result.
Cancer has truly changed our lives. We aren’t able to go out and do normal activities that many children can do for fear of illness. We are cautious about going anywhere inside with larger crowds, and even outside with larger crowds. Hudson hasn’t been exposed to the world as other children have been. As a third-grade teacher, I took all of 2020-2021 unpaid leave off to be with Hudson during his treatments. With his recent ER and 7-day PICU stay, we are struggling financially.
Hudson is determined, strong, resilient, and brave. He is a fighter!
