Hereditary cancer strains yet strengthens family

Angie Rush and her husband Aaron, along with their three sons, Carter, 1, Tristen, 6, and Caison, 3, take a walk near her Marietta home on July 27, 2020.  STEVE SCHAEFER FOR THE ATLANTA JOURNAL-CONSTITUTION
Angie Rush and her husband Aaron, along with their three sons, Carter, 1, Tristen, 6, and Caison, 3, take a walk near her Marietta home on July 27, 2020. STEVE SCHAEFER FOR THE ATLANTA JOURNAL-CONSTITUTION

Credit: Steve Schaefer

Credit: Steve Schaefer

Mother, three sons have all fought childhood eye affliction yet adjusted to changes

There are five members in the Rush family and four of them are cancer survivors.

It began with the mother, Angie, who was diagnosed with retinoblastoma as a baby. There was a 50-50 chance that one day she would pass the gene for what is thought to be the most common form of childhood eye cancer to her children. Still, she was stunned just days after welcoming her first son to hear the word cancer. When her second son was born, she heard it again: cancer. When her third son was 6 months old: cancer. These have been harrowing years for the Rush family, but they are resolute in their faith, heels deeply sunk into a foundation of hope and positivity. They don’t look back, they don’t look too far ahead; rather, they focus on the present, which looks like three towheaded little boys, all healthy and happy.

Her mother’s brown eyes

Angie was the first child born to Carl and Patti Schneider in December of 1981. When she was around 6 weeks old, her parents saw something they described as “off” in her eyes. They took her to the pediatrician, where she was referred to an ophthalmologist, and then sent to a children’s hospital near them in Ann Arbor, Michigan, known today as C.S. Mott Children’s Hospital. That is where she was formally diagnosed.

Retinoblastoma is a malignant tumor, an eye cancer that begins in the sensitive lining on the inside of the eye known as the retina. This cancer most commonly affects young children.

“It was a shock,” said Patti, 65. “They told us pretty matter-of-factly that she had to have her eye removed and they said ‘hopefully, it won’t go into her brain and, if it does go into her brain, you will have to get someone else to manage it,’ because this doctor only specialized in retinoblastoma.”

Angie’s left eye, the one that had to be removed, was entirely filled with a tumor.

“She was still so little, with brown eyes just like her mother’s,” said Carl, 65.

After surgery, the Schneiders learned the cancer had not spread.

Angie Rush holds her son Carter while on a walk near her Marietta home on July 27, 2020.  STEVE SCHAEFER FOR THE
Angie Rush holds her son Carter while on a walk near her Marietta home on July 27, 2020. STEVE SCHAEFER FOR THE

Credit: Steve Schaefer

Credit: Steve Schaefer

“We were relieved that an eye is all she lost,” said Patti. “She did well after surgery, then when she was 6 months old, we took her to an ocularist to get an artificial eye. She adjusted well to it and was quite comfortable taking it out. There were several instances when she would pick an inappropriate moment, like family gatherings, to pop it out and put it on the table. We’d just put it right back in and carry on.”

Angie’s parents continued taking her for monthly eye checks and, around the same time she received her artificial eye, a tumor was found in her right eye. Instead of using chemotherapy, as is often used today, doctors used plaque therapy, which consists of cobalt on a lead shield. The shield is placed behind the eye with cobalt toward the eye and lead toward the brain. Doctors stitch it like this for one to two days, then remove it. It delivers a small amount of radiation into the eye. Luckily, this treatment worked, and Angie kept her right eye.

The Schneiders raised Angie like a typical child. They took a cue from their resilient daughter, who carried on in life with general ease.

According to Angie, growing up with an artificial eye was not as much of a challenge as one might think.

“It’s something I’ve had my whole life, so I didn’t think anything different about it,” said Angie. “There were times that it made things a little difficult, like I was a bit hesitant to play sports sometimes. I dabbled in volleyball and ran track, but I lacked hand-eye coordination. My eye is such a part of who I am, it’s hard to imagine it not being a part of me.”

‘Save his life, save his eyes, save his vision’

Angie was teaching second graders in Indianapolis in 2009 when she met Aaron Rush on eHarmony, a well-known dating site. The two shared a Lutheran faith and love for family. Angie loved Aaron’s blue eyes. She liked that he played guitar, was very smart, and made her laugh. Aaron was first attracted to Angie’s smile and her caring heart. They complement each other well. Aaron likes to have a plan for everything, while Angie is more apt to wing it; and while Angie is more of a worrier, Aaron is not.

They married in 2011 before 150 people at Our Shepherd Lutheran Church in Indianapolis, and moved to Marietta, Georgia, just two months later.

“My parents had relocated to Marietta from Michigan, where I grew up, and we wanted to be close to them,” said Angie, 38.

The Schneiders moved for Carl’s job. He’s pastor at Faith Lutheran Church, and Angie works there as a teacher.

Aaron, 40, is a physical therapist assistant.

The Rushes spent their first years of marriage traveling and taking care of their dogs. Aaron liked to play golf and baseball, while Angie loved to run at Kennesaw Mountain Park.

The couple always knew they wanted children. Angie wanted three, Aaron wanted one. Angie jokes that she won that one. They were overjoyed to welcome their first, a boy they named Tristen, in March of 2014.

Angie Rush and her husband Aaron, along with their three sons, Carter, 1, Tristen, 6, and Caison, 3, take a walk near her Marietta home on July 27, 2020.  STEVE SCHAEFER FOR THE ATLANTA JOURNAL-CONSTITUTION
Angie Rush and her husband Aaron, along with their three sons, Carter, 1, Tristen, 6, and Caison, 3, take a walk near her Marietta home on July 27, 2020. STEVE SCHAEFER FOR THE ATLANTA JOURNAL-CONSTITUTION

Credit: Steve Schaefer

Credit: Steve Schaefer

“My pregnancy was fine until the end when I developed preeclampsia,” said Angie. “Tristen was delivered via cesarean section six weeks early. He was fine, but only weighed 3 pounds and 9 ounces.”

Tristen spent three weeks in the NICU at Wellstar Kennestone Hospital, then, right before he was released, an eye check was administered.

“Because of my history, we knew there was a risk of cancer, but, because he was born early, the doctors were more concerned with him growing than they were about his eyes,” said Angie. “We were shocked and scared when he was diagnosed with retinoblastoma. He was so small. His first car ride was in an ambulance, which transported him to the NICU at Children’s Healthcare of Atlanta at Egleston. A central venous line was placed in Tristen’s chest, and he received his first round of chemo before he was a month old.”

There were tumors in both of Tristen’s eyes. This is known as bilateral retinoblastoma. He had six rounds of chemo — one each month, along with monthly eye exams with a laser treatment, which required anesthesia every time.

“It was a sad, emotional time, this new territory of being a mother and the mother of a cancer patient,” said Angie. “At the beginning, the highest focus was to save his life, then to save his eyes, then to save as much vision as possible.”

At the helm of the Rushes’ medical team are two doctors: ophthalmologist Dr. G. Baker Hubbard, director of Retina Service at Emory Eye Center, and oncologist Dr. Thomas Olson, director of the Solid Tumor Program at the Aflac Cancer and Blood Disorders Center of Children’s.

“Retinoblastoma occurs in about 10 to 14 cases per million children, so 1 in 15,000 live births,” said Olson. “Two-thirds of cases are sporadic and one-third of cases are familial, or heritable.”

Angie’s case was sporadic, but she became familial when tumors appeared in her other eye, Olson said, which means there was a 50% chance of her passing the gene on to her children. With familial retinoblastoma, both eyes are often involved, there is a mutation of the retina, and a mutation in other cells of the body, which means a potential for other issues, including a 20% chance of getting another cancer in their lifetime, he said.

Tristen, Caison, and Carter Rush enjoy a family outing in Marietta Square at the end of May.
Tristen, Caison, and Carter Rush enjoy a family outing in Marietta Square at the end of May.

Olson has been an oncologist for 39 years and has seen nearly all the retinoblastoma cases in the Southeast over the past 25 years. He and Hubbard, an ophthalmologist for 20 years, work together on retinoblastoma cases.

“The doctors didn’t tell us whether or not Tristen would lose his eye because they just didn’t know,” said Angie. “While they were cautious and would never say ‘I don’t think he’s going to lose his eye,’ they made us feel hopeful.”

Chemo days began with Hubbard for the EUA, evaluation under anesthetic, where a laser treatment is conducted on active tumors. Next was a blood test, and a bit of a wait for Tristen’s medicine to be prepared. Chemo usually started in the afternoons and each treatment lasted an hour and a half. Once it began, Tristen was free to sit on Angie’s lap, where he often dozed off. She would hold him the entire time. Sometimes Aaron was there, too, and the parents would carefully switch off, careful not to wake their boy.

During many chemo visits, Tristen and his parents were placed in a private room, often a corner room at the end of the hall with a window that looked out on the hospital’s exterior and Clifton Road. The rooms all had a bed, a chair, and sink with cabinets above. The soap at Children’s is all the same, from the entrance to the private rooms, said Angie. The sterile smell is embedded in her memory. For her, it is the smell of chemotherapy.

The Rushes exhaled a bit after Tristen’s first six months when chemo ended. He grew normally, thrived, and continued monthly eye checks until his first birthday. Now 6, he still goes for eye checks every six months, but will transition to office exams, without anesthesia, sometime in the next two years.

Hopeful, but realistic

In September 2016, Angie and Aaron were excited to welcome their second son, Caison. It was a good pregnancy, but when Angie noticed the baby was not moving as much, he was delivered four weeks early via C-section. He was healthy, no NICU stay necessary, but just two days after being born, tumors were discovered in each of Caison’s eyes.

“Aaron took the second one better than I did,” said Angie. “He knew that was a possibility and for me, it wasn’t a shock, but it felt so unfair to have another child who would have to go through all that his older brother did. It’s a blessing because you know what’s going to happen, but it’s also so hard, because you know what’s going to happen.”

At just 2 weeks old, Caison’s central venous line was placed and a regimen of laser treatments under anesthesia, followed by chemo began, just as it was done for his big brother two years prior.

Caison Rush rings the bell at the Aflac Cancer and Blood Disorders Center of Children's Healthcare of Atlanta to celebrate his final chemotherapy treatment in 2017.
Caison Rush rings the bell at the Aflac Cancer and Blood Disorders Center of Children's Healthcare of Atlanta to celebrate his final chemotherapy treatment in 2017.

Credit: CONTRIBUTED/Angie Rush

Credit: CONTRIBUTED/Angie Rush

Unlike Tristen, after the six months of treatment, Caison kept getting new tumors and old ones would regrow. Hubbard continued monthly laser treatments until Caison was 1 year old.

One of the disadvantages to the laser is that there will always be a scar, or a blind spot, wherever a tumor is treated. Tristen and Caison, now 3, both have significant blind spots in the center of their eyes.

“It would be more difficult to adjust to the blind spots if the boys were adults, but this is all they know and they’ve adjusted well,” said Hubbard. “They will be able to read, drive, and play sports without any difficulty.”

Angie and Aaron were happily surprised to learn they were expecting a third baby. Their son Carter was born three weeks early, in July 2019. The Rushes were also happily surprised when Hubbard did not find any tumors in the infant’s eyes.

“The doctors suggested genetic testing when Carter was a few months old,” said Angie. “The results came back positive for the RB1 gene, which is responsible for most cases of retinoblastoma. We went in every month to have his eyes checked and still, no tumors — not until January of this year when he was 6 months old. They found one tumor in his right eye. We had been hopeful, but realistic. We knew it was probably coming.”

Carter, now 1, was given the same regimen of treatment as his brothers and received his final chemo on June 8. He will still receive laser treatments for five months, but, so far, his vision has been saved.

How to be brave

As if becoming parents isn’t transformative enough, six years of cancer diagnoses and medical treatments upended Angie and Aaron’s world.

“Obviously, in the beginning, it was a lot of unknowns that made it difficult, especially for someone like me who is kind of a control freak. It’s hard when you have no control,” said Aaron. “Angie is a living testament to knowing it could all turn out good, but still, it’s difficult emotionally, mentally, financially. It’s been tricky, but we’ve supported each other and juggled appointments and everything else well.”

Hubbard agrees.

“They are delightful people and a real pleasure to work with,” the ophthalmologist said. “It’s been hard on everyone, but they’ve been tough, diligent and conscientious. They are an inspirational family.”

Carter Rush smiles big at his last chemotherapy treatment for retinoblastoma.
Carter Rush smiles big at his last chemotherapy treatment for retinoblastoma.

Credit: CONTRIBUTED/Angie Rush

Credit: CONTRIBUTED/Angie Rush

With medical bills stacking up, the Rushes started a GoFundMe campaign and have made sacrifices, like selling their house. They moved in with Angie’s parents a year and a half ago. They started in a smaller home and moved to a five bedroom when they realized it may be more of a permanent situation.

“Our bills were huge, and we saw the opportunity to save some money,” said Aaron. “Carl and Patti have been more than gracious and, though selling our home was a hard decision, with our trust in God, we knew everything would be fine. This allows us to relax a bit and live as normal a life as we can. The boys are all doing well, they act completely normal for their ages. We try to treat them like regular kids and go from there.”

Tristen, a recent kindergarten graduate, is friendly and talkative. He loves many things — singing, reading, maps, and, most of all, his brothers. Caison, who inherited Aaron’s blue eyes, is a funny little guy, sensitive and imaginative, with a love for all things that go: trains, trucks, and so on. Angie and Aaron say Carter is the easiest baby of all three boys. He is happy, he loves to eat, loves music, and he adores the family dog, a chocolate Lab named Kenan.

The family has stayed home more during the coronavirus pandemic, especially since Carter was having chemo treatments, but they have maintained their routine of lots of outdoor time, whether playing together in the front yard, or visiting the park in their neighborhood.

“We greatly value family time and, if anything, our experience has only made us closer and stronger,” said Aaron. “Cancer is something the boys went through, but it does not define them. It does make them special in the sense that they, in their short time on earth, have experienced something many have not. They know that doctor appointments and eyedrops are just what we do, and they have accepted it well. Tristen, Caison and Carter are strong, and Angie and I have fed off their strength. They have shown us how to be brave.”

Ringing of the bell

Upon completion of each boy’s chemotherapy treatment, Angie and Aaron Rush have helped their sons ring a bell at the clinic, a celebratory tradition used around the world.

“The bell ringing is a meaningful way to signify a transition in treatment journeys. We celebrate and acknowledge many different things with bell ringing, like a discharge from a blood marrow transplant admission, completing chemotherapy, completing radiation therapy, or transitioning to medical care at home,” said Jessica Westbrooks, certified child life specialist at the Aflac Cancer and Blood Disorders Center.

“Bell ringing means different things to different families, but for many of us medical staff members, it is a way to come together and recognize the perseverance of a patient and family through challenges and hardships, and to send love and care as they leave our doors.”

Childhood Cancer Awareness Month

Next month, September, is Childhood Cancer Awareness Month. In 2019, the Aflac Cancer and Blood Disorders Center of Children’s diagnosed 475 new cancer patients. Nearly 16,000 children in the United States will be diagnosed with cancer this year. For more information, visit www.choa.org.