Posted: April 25, 2017
When most mothers return to the workforce after having a baby, their biggest concern is leaving behind a newborn with a nanny or babysitter. For Crystal Richard, she had to worry about losing her daughter, job and insurance.
While at her 2 month well visit, Crystal’s daughter Ava began to have some unusual rapid eye movements that concerned her doctor. She was referred to a local pediatric ophthalmologist who delivered her diagnosis – bilateral retinoblastoma – and she was immediately referred to a national retinoblastoma specialist.
“Our reaction was complete shock (obviously). As a nurse, I knew any sort of ‘blastoma’ was not a good cancer diagnosis. We had no clue that kids even got eye cancer. We immediately feared that we were going to lose our only child after knowing her for only two short months.”
By Monday morning the family, who lives in Virginia, had traveled five hours to Philadelphia to begin treatment. They also notified their employers, and Crystal didn’t know if she would lose her job or insurance. Luckily, her employer and coworkers were incredibly supportive. They donated PTO and raised money to help her family.
Ava’s treatment began with consults at both Wills Eye Hospital in Philadelphia and the Children’s Hospital of Philadelphia. She had an awake eye exam, in which she was swaddled, held down, and metal instruments were used to hold open her eyes to assess the size and location of the tumors. This was by far one of the worst parts of her treatment for her parents because Ava was too small for anesthesia at the time.
After her eye exam, the family had an MRI of Ava’s brain, as well as orbits, to see if the cancer had spread beyond her eyes to her brain. If it had, that would further escalate her treatment plan. When it was determined that the cancer had not spread, she had lab work done and began systemic chemotherapy. She received three drugs the first day and was monitored closely.
“It is crazy how your life can turn upside down in the blink of an eye and make you realize what is important.”
The second day of treatment involved one drug. They repeated this 3-day cycle – eye exam, day 1 of chemo, day 2 of chemo – for six months. This happened at the outpatient unit, so Ava could stay with Crystal and her family at the Ronald McDonald House at the end of each treatment day.
When Ava was 6 months old, it seemed that her cancer was somewhat resistant to chemotherapy, and she continued to have recurrence of eye tumors. Because of this, she began having eye exams under anesthesia and was treated further with laser therapy and cryotherapy. After a good summer of less frequent trips and treatment, Ava had another recurrence that warranted more significant intervention. The specialist at Wills Eye recommended treatment of intra-arterial chemotherapy, which requires a neurosurgical procedure.
The family was then referred to a third hospital in Philly to a neurosurgeon who would perform a cerebral angiogram (kind of like a cardiac catheter, but up into the brain) to inject chemotherapy directly into the ophthalmic artery that supplies blood to the eye. They started with her one eye and rotated every few weeks between each, totaling two rounds for each eye.
Due to concerns that tumors were growing during this interim period, another procedure was performed to inject chemo directly into the vitreous fluid in the eye that was not being treated with intra-arterial chemo for that particular week.
“Although it was very difficult to have a sick baby who couldn’t express what was wrong with her, we are grateful that a large amount of Ava’s treatment was while she was so small. She will not remember the worst parts of her cancer diagnosis.”
They traveled to Philly every other week for a couple of months. Since retinoblastoma is a hereditary cancer, both Crystal and her husband had dilated eye exams and genetic testing performed, in addition to Ava. Ava was confirmed to have the RB mutation, which means her children will have a 50/50 chance of developing retinoblastoma. That’s why it’s so important for us to find better treatments that will help protect the future of every superhero.
Since her last administration of intra-arterial chemo, Ava has been stable with no new tumor growth. It has been over two years. But she has follow-ups every few months because there is still a risk of tumor recurrence throughout early childhood.
“We feel like we were really lucky during Ava’s treatment. She tolerated things very well, never cried as a baby when having IV lines placed or blood drawn, and was generally a happy baby and toddler as she went through some pretty intense things. It made our little family and marriage stronger to have gone through what we all have.”
It was an incredibly stressful time in their lives, but the situation made the family realize how lucky they were to have the friends, family, co-workers (and even strangers), helping them along the way.
Two of these strangers were a mother and son that Crystal met in Philadelphia at the Ronald McDonald House. The son was being treated for another type of pediatric cancer, and the moms instantly connected. It turned out that the families were from the same city, and the mom was active in their local cancer family community, so they were invited to check out a CureSearch Walk. The rest, they say, is history.
“From that time on, we knew we wanted to help with fundraising and awareness and got some of our family involved this past year. We hope to continue to expand ‘Team Ava’ each and every year. These kids matter and need their stories to be heard.”
Today, at 3 1/2 years old, Ava is full of energy, is always causing trouble (the good kind) and she’s never met a stranger she couldn’t talk to or make smile. She dreads getting eye drops at her follow-up visits, but other than that, she sees her doctors and nurses as friends who she is going to “visit” in Philadelphia.
“She can sing and dance and laugh her way through any tough situation.”
Ava loves to dance, sing, tumble, and play with her best pal, her dog Naddy. She works with a vision teacher once a week to teach her Braille and other methods to start integrating her into a learning environment (she has a visual impairment now due to the original location of the tumors, which are now scarring on her retina).
To Crystal and her family, Ava is a superhero because of her strength – strength that she is not even aware of – during tough times. She was able to handle the tough and complex medical procedures like a true champion, and at the same time, she interacted with the medical professionals as though they were old pals.
Queen Hippolyta (Wonder Woman’s mom) once said, “In a world of ordinary mortals, you are a Wonder Woman.” That’s exactly what Ava is.
Help us fight the villain cancer in our countdown to National Superhero Day by donating toward lifesaving research. Help us give superheroes like Ava a chance to live longer, better and healthier lives.
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