Owen’s Story

Posted on 2016-07-25

Owen is a second-generation Retinoblastoma fighter. We knew that he would need to be screened from birth, so we scheduled an ophthalmology appointment before he was born. We did a blood draw at our first appointment and met with a genetic counselor who was wonderful and instrumental in pushing the labs to get results as quickly as possible. Owen had regular screening appointments starting when he was just a few days old and then every few weeks after that. With every appointment and clear result, we started to breath a little easier. My husband was born with Retinoblastoma and we, naïvely, assumed that Owen would be, too, if he had the same genetic mutation.

We got Owen’s genetic results on a Friday, September 20, 2013. He tested positive for the same mutation as his father, substitution mutation on the Rb1 gene. Three days later on September 23, he had another screening, and they found his first tumor.

We had his first MRI and EUA (Exam Under Anesthesia) a few days later, where he had his first laser treatment. After his second EUA, we were told there was nothing more they could do for us at our hospital, so we sought a second opinion from a Retinoblastoma specialist, Dr. Jonathan Kim, at Children’s Hospital Los Angeles.

After our first appointment with Dr. Kim, Owen started chemotherapy with our oncologist at home in Utah. We continued to go back and forth between LA and Utah and then transferred ophthalmology back to Utah when Owen was stable (after two rounds of chemo). Unfortunately a few months after the transfer, our doctor at home misdiagnosed a new tumor as a retinal tear. After seeking a second opinion (again) at CHLA, we realized what it was, but the delay in treatment caused Owen to require chemotherapy again. We realized then that traveling to LA was the best thing we could do for Owen, and we haven’t looked back.

After those last two rounds of chemotherapy (at 13-14 months) Owen had no tumor activity for over a year. Our appointments were spaced out to every three months, and we were all breathing a little easier.

On September 24, 2015, during a routine EUA, Owen’s doctors discovered a new tumor. We were all completely shocked. Owen received a laser treatment that day. Owen had his first major vision loss that day because the tumor had started to invade his central vision, and they had to laser into the vision field. We headed back to Utah to wait the three weeks until the next EUA, praying that we wouldn’t need to do chemotherapy again.

Three weeks later, our doctors found that Owen’s tumor had shrunk 75%, which was more than any of us could have hoped for. They continued to laser the tumor, and it was pronounced officially dead in November 2015. We haven’t had any tumor activity since, and we’re crossing our fingers, knocking on wood and praying that it stays that way.

Owen is almost 3 years old and the sweetest, brightest, most fun little boy we could ask for. He is adored by us and everyone that comes in contact with him. He loves the attention he gets from his doctors and nurses and even though he didn’t like going to the hospital for a while, he’s starting to cooperate again and even lets them put the blood pressure cuff on without a fight. We love him to pieces and can’t wait until we can officially say he is cancer free.