Stories and photographs provided by Sabra B.
Did you know that Retinoblastoma can be hereditary? Brayden and his father, Jason both carry the gene mutation. This is their story:
“On April 1, 2009, we welcomed a beautiful blue eyed little boy to our family. His name is Brayden. Two weeks later, on April 15, 2009 our lives were changed forever by cancer. Brayden’s dad Jason had a very rare form of eye cancer when he was a child and Jason lost his lefteye to Retinoblastoma at the age of 20 months old. Jason has remained cancer free and has never needed any other treatment aside from having his left eye enucleated. He even went to college on a soccer scholarship as a goalie and has never let having one eye hold him back.
Everyone we spoke with in the medical field and all the research we did before we started a family told us thatalthough there was a chance we could have a child with Retinoblastoma, the chance was very small, less than 4%. We have 3 children, our girls, Erika and Ashley are cancer free and do not carry the gene mutation that causes hereditary Retinoblastoma. We had our girls checked every 3 months from birth to age 5 by a pediatric ophthalmologist just to make sure they were ok and did not have Retinoblastoma. At our youngest daughter’s last appointment, I shared with the pediatric ophthalmologist that I was expecting our 3rd child so I made an appointment for “Baby” Bateman for 2 weeks after his due date. When I took Brayden to see the pediatric ophthalmologist, I thought it was just a routine check-up. When Dr. Johnson looked in Brayden’s eyes, he got very quiet. He p
aused and looked at me as I was holding Brayden and said, “the left eye is abnormal.” I knew what he meant, he didn’t even have to say cancer or Retinoblastoma, I knew our 2 week old son had cancer. What I didn’t know was what was next. I asked Dr. Johnson, “If this was your child, who would you have treat him?” He didn’t hesitate and said we needed to go to Wills Eye in Philadelphia and have Dr. Carol Shields treat Brayden.
Four days later, we were in Philadelphia starting Brayden’s fight against Retinoblastoma and his first round of chemotherapy at 20 days old. Looking back over the past four years, I am glad that I didn’t know how hard the road would be ahead or everything
Brayden would have to endure to get to where we are today. 9 tumors (6 in his left eye and 3 in his right eye), 3 cysts in his brain, 9 rounds of systemic chemo, a radioactive plaque, chicken pox in the middle of chemo, multiple hospital admissions for fever, 3 surgeries to place / remove ports and central lines, 13 MRIs, two seizures, multiple EUAs and laser eye surgeries (I think 21, but I’ve lost track), so many blood draws, GCSF injections and line flushes that I can’t count and enough flight hours in an airplane to literally have a pilot’s license. Brayden has fought chronic infections after chemo due to a compromised immune system the past 3 years and is beginning treatment to hopefully fix what the chemo damaged while saving his life, his eyes and his vision. Brayden’s most recent EUA in May 2013 revealed that all of Brayden’s tumors are stable and he has 20/30 vision in his right eye and 20/80 vision in his left eye. God truly gives you what you can handle when you can handle it and has continued to provide for our family in an amazing way. He has also put people in our path along this journey that we are so thankful for as well as so much help and support from friends and family. We have been blessed to have Brayden treated with the best doctors in the world for Retinoblastoma and to have an amazing team of doctors at home to coordinate his care with his doctors in Philly.
Each day I am reminded of how precious life is and we celebrate that Brayden is stable and cancer free right now. Our prayer is that cancer is in Brayden’s past and that God will continue to use our family and Brayden’s journey to help others along this journey. Early detection of Retinoblastoma is the key to successfully treating this form of cancer to save the child’s life, eyes and vision. If you ever see a photo of a child with a white glow instead of a red eye reflex, encourage them to see a pediatric ophthalmologist immediately. Knowing the glow saves lives!”
To learn more about Brayden’s story visit the following site: www.caringbridge.org/visit/braydenbateman
You can also watch coverage of Brayden’s story on Fox News below: