FamilyConnect

By Alicia Wolfe, Teacher of the Visually Impaired and AFB Content Consultant

The Diagnosis

Jake was six months old. Ally was five. Life was normal for Nancy and her husband, Mike. Then one day, Nancy remembered thinking to herself, “Ally used to hold my face and look into my eyes, but Jake wasn’t doing that.” When Nancy asked other people if Jake should be doing the same thing, she received unconcerned responses such as “He’s a boy. Boys don’t do that.” Nancy continued to notice subtle differences with Jake’s vision such as when he reached for his cheerios he would turn his head to see them. Feeling uneasy, she made an appointment with the pediatrician. At the appointment, the pediatrician reassured Nancy that Jake could see just fine, but her gut told her otherwise. Fortunately, the pediatrician referred her to a pediatric ophthalmologist. Nancy made the first available appointment.

When Nancy visited her parents in Indiana, she shared her concerns about Jake’s vision with her father. He agreed that there seemed to be an obstruction in Jake’s vision. “That feeling in my gut returned,” Nancy explained. The feeling became overwhelming a few days later when Nancy took Jake to the gym nursery so she could work out. A complete stranger came out of the nursery with Jake and said to Nancy, “Can he see okay?” It was at that very moment Nancy knew something was wrong.

Four days later, in a matter of minutes, a retina specialist diagnosed Jake with bilateral retinoblastoma. Nancy remembers the exact moment the doctor said, “This is cancer.” She remembers every detail of getting Jake’s diagnosis, just as if it were yesterday.

Retinoblastoma is a rare and often malignant form of eye cancer that causes loss of vision in the affected eyes, and sometimes removal of the eyes is necessary. Jake’s retina specialist recommended he see an ocular oncologist in Miami to treat his condition. Nancy described it as feeling as if she were in a raft on water rapids without a paddle, just hoping they were on the right path.

When the family arrived in Miami, the oncologist saw Jake right away and confirmed he had stage 5B bilateral retinoblastoma. Jake’s retina had partially detached in his right eye and fully detached in his left eye. On the next day, the oncologist examined Jake’s eyes under anesthesia and discussed treatment options with Nancy and Mike.

Saving Sight

Jake immediately began receiving laser treatments to stop the tumors from growing in his eyes and then he underwent three days of chemotherapy to kill the cancer cells and shrink the size of the tumors. After the treatments, Jake’s family made the five-hour trip home and would return to Miami almost every three weeks. Unbeknownst to Nancy and Mike, this treatment plan would continue for the next five years.

During each checkup, the doctor would check Jake’s tumors. “Sometimes there were no new tumors. Other times, there would be a new tumor,” Nancy explained. “We never knew what kind of news we were going to get.” Nancy’s brother moved close to the family to help her. He thought it would be for a short period, but “it ended up being our life,” Nancy explained.

“I had these fantasies that Miami was going to be cancer, and home would be our good place, but Jake was so sick,” Nancy explained. She remembers one occasion when Jake got so ill from the chemotherapy he couldn’t keep liquids or food down. He screamed and cried constantly, which was naturally upsetting to her. One of the most invaluable lessons about parenting that Nancy’s mom taught her was to do what she needed to do now (to survive) and worry about fixing things later. “Many nights I’d put Jake in the bed with me and Mike. On those nights, we’d all sleep well,” Nancy shared.

When Jake was two years old, the doctor thought his left eye might need to be removed. Nancy and Mike were not ready to give up on saving Jake’s eyesight, so they drove him to a church in central Florida where over 1,000 people prayed for Jake. Unexplained by the doctors, but not a mystery to Nancy and Mike, the tumors disappeared from Jake’s left eye. “We had more time,” Nancy said. The family continued to travel to Miami for three more years. Over the course of five years, Jake received over 100 Cryo Laser Treatments and eight rounds of chemotherapy.

When Jake was five years old, the doctor told Nancy and Mike it was time; Jake needed to have his left eye removed.

“By then, we were ready for it in a sense. Perhaps all we were ready for was the emotional ups and downs and traveling back and forth to Miami to end. Was I ready for his eye to be removed? Not really. I remember having hope and fear at the same time. I wanted so desperately to save his left eye hoping that 20 years into the future it could be fixed, and his vision could be restored. I was so overwhelmed by the idea of having his eye removed,” Nancy explained.

Nancy said she refocused her energy when the doctor sat her down and said, “First let’s focus on saving his life and then we will save his eyesight.” That day, Nancy and Mike told Jake he was going to get a new eye that wouldn’t be sick anymore.

While Nancy was in the hospital with Jake, she said she remembered looking at him and thanking God for giving him to her. She felt she had been chosen to be his mom. She said, “I was never angry about his diagnosis and all that came with it. I never asked why. All I wanted was to have the strength to handle things with dignity. I was able to do this because I had an awesome partner by my side. Mike and I understood we were going to handle the diagnosis differently, and it was important we respected that aspect of the process.”

The family returned home for a week after Jake’s left eye was removed. He wore a patch over the orbit of his eye until the doctor took it off during a follow-up visit. This was the first time Nancy and Mike saw Jake without his left eye. “This was really, really, really hard for me and Mike,” Nancy explained. Jake did not have his prosthesis yet. He had a conformer shell (a clear plastic lens fitted to hold the shape of his eye socket allowing it to heal) in the place of his eye.

Choosing Joy

The following weekend, Nancy and Mike decided to attend a holiday party. With some reluctance, they hired a sitter for Jake and his sister. While Nancy and Mike were out, the conformer came out of Jake’s eye. Nancy remembered Mike answered the frantic call from the sitter: “Mike stayed calm and told the sitter what to do to put the conformer back in Jake’s eye—like he had done it one million times.” Amazingly, the sitter put the conformer back into Jake’s orbit not knowing that Mike had no experience putting the conformer back in. “It was how Mike handled the situation which made everything okay. Of course, I was concerned it might happen again while I was alone with Jake, so I called my dad. My dad simply said, ‘Nancy, its okay. There are plenty of eye doctors in town if it does happen.’ And so, I moved on.”

Happy Birthday Eye

After eight weeks, the orbit of Jake’s eye had healed, and he was ready to get his first prosthesis. Nancy was excited for the moment. However, she explained, “When they put it in, I almost could not look at Jake because it was not right. The prosthesis wasn’t painted to match his other eye and it was bigger. I was sick to my stomach. I wanted it to be perfect for him.”

“The only way I could navigate things was not to dwell on them. So, on the way home, I pulled into Publix and got cake mix for the kids to bake a cake,” Nancy said. When they got home, Jake and his sister baked a cake in the shape of an eye and from that point forward the family had a birthday celebration each time Jake received a new prosthetic eye. The prosthetic eyes were often mailed to the home and naturally Jake found humor in telling people his new eye was coming in the mail.

Advice from a Parent’s Perspective

As Jake grew up, Nancy explained it was important to let him be a kid and to do things all kids typically do such as play sports. Against doctor’s recommendations, Mike and Nancy let Jake try to play every sport he could, except hockey. They realized the puck moved too fast for him to experience success. Nancy believes Jake felt empowered by the choices she and Mike gave him to try “normal” things and to learn by doing. He played football and soon realized it was too competitive for him. He also played baseball but eventually had to make the emotional decision to give it up because it was too difficult for him to track the ball. Through this self-exploration, Jake eventually found a sport he could not only learn from and play with his dad but also excel at as team captain, golf.

Nancy always encouraged Jake to be open and honest about his visual impairment, and consequentially, others who were curious about him would respect and appreciate him. Teaching and enabling Jake to be his own advocate was essential to his success, especially when he was in middle school and began to participate in his Individualized Education Program meetings. Nancy and Mike found great value in listening to Jake and validating his feelings as he grew up. Nancy explained, “When Jake had choices and believed he was heard, he felt empowered.”

Reflecting back, Nancy said, “At Jake’s first IEP meeting, I was incredibly overwhelmed my child had a team—a room full of people committed to supporting him. As Jake grew into his own person, it was important for him to begin to participate in his IEP meetings. Others needed to understand Jake had feelings about the decisions being made for and about him.” Nancy and Mike supported Jake through the expectations they had for him to advocate for himself about his goals and the technology he found most useful to access his classwork. “It is important for service providers to keep in mind services are not a one size and to value the student’s input and perspective,” Nancy said.

One of Nancy’s most memorable IEP meetings was when Jake was in middle school. The teachers were more concerned about his socializing (or behavior) than his needs related to his visual impairment. This meeting was important for Jake because he felt his teachers looked past his disability and saw him as a typical middle school student who was humorous—not a student with a visual impairment. Nancy shared, “This was refreshing and exciting at the same time because Jake’s self-esteem was important to us.”

Tough Conversations

As Jake grew older, Nancy said, “He had chores, and we kept our expectations high. He never got a pass because he has a visual impairment nor did he use his visual limitations as an excuse. Although a few times Jake would jokingly say, ‘But mom, I’m visually impaired,’ and I’d say with a chuckle, ‘Nice try….do it anyway.'”

With age also approached the difficult conversations Nancy and Mike did not look forward to having with Jake, especially about driving. “It was a conversation we were not ready to have. But, when Jake was eight years old, he overheard me talking on the phone with Mike about having to tell Jake that he would not be able to drive one day,” Nancy said. Naturally, Jake had some initial disappointment, but he never complained. “He could not wait for each of his friends to get their driver’s license because he was pumped up he had another friend who could give him a ride. I give him so much credit for forging those relationships with his friends.”

Nancy had another anticipated conversation with Jake two years ago. She was reminding him about limiting his exposure to the sun and giving him advice about not smoking when he asked about the hereditary factors of retinoblastoma. Nancy recalls Jake saying, “At least I don’t have to worry about my kids getting this!” Nancy said, “Yes, there is a 50 percent chance.” Jake replied, “At least it’s not a 100 percent chance, right Mom?”

Endless Possibilities

Jake just finished his first semester of college. He lives on campus and is a member of Sigma Chi. As Nancy shared her stories about Jake’s college experience, it was evident his life’s success story started the day he was diagnosed with a visual impairment and when his mom chose to embrace a Charles R. Swindoll quote as her life’s mantra. “We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude… I am convinced that life is 10 percent what happens to me and 90 percent how I react to it. And so, it is with you… we are in charge of our attitudes.”