Learning about Retinoblastoma: A Type of Eye Cancer
- Aria Lee Bohannon, 1, is undergoing treatment for bilateral retinoblastoma after her maternal grandmother noticed a white reflection in the baby girl’s eye.
- The rare type of eye cancer Aria has is the same as the one her mom was diagnosed with about 40 years ago.
- Retinoblastoma is the most common type of eye cancer found in children, but it is rare. Only about 200-300 children will be diagnosed with it in the U.S. each year.
- Here at SurvivorNet, we're always encouraging people to advocate for themselves when it comes to cancer and, more generally, health care. But when it comes to a child, the parent must become the advocate and make sure any possible signs of cancer are fully and expeditiously addressed.
It was something the grandmother was familiar with as her daughter, Aria’s mother, Heavenlee Van Buren, was also diagnosed with the same disease 40 years earlier.
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“She actually still currently has the large one in her left but the right ones are slowly shrinking due to the chemotherapy that she's going through and laser treatments,” Van Buren continued. “It's freaky to know that my daughter is about to go through the same thing that I went through as a baby."
“I think my biggest fear with all this though, is her having to go through all the treatments and still having to lose her eye," Aria's father, Michael Bohannon, told the news outlet. “If it has to happen, it has to happen, but we're going to do all the treatments even if that's still going to happen.”
Due to the cancer being so rare, Aria spends her time between Jacksonville and Miami to get targeted chemotherapy despite the high costs of treatment. Her first round of chemo was on October 4, and her second was on the 11th.
As Aria continues treatment, her parents have set up a GoFundMe page to help with the rising medical bills, which has since raised more than $5,000 of its $30,000 goal.
Referring to how Aria is getting treatment about 350 miles away from their home, Van Buren explained on the fundraising page, “My fiancé will have to go on unpaid medical leave and we will have to stay there until her treatments are over, there is no known timeframe.”
“This is all gonna take a serious toll on us, we are gonna have to cancel our lease for our apartment and have to find a place for all our belongings, I'm gonna have to get rid of a family pet as I can't take him with us, our car isn't in the right condition for the drives back are forth from Jacksonville and Miami, we truly are terrified as we don't know how we are gonna afford living expenses, gas, food, baby stuff and etc,” she added.
“Anything helps and we appreciate all support received. She's gonna beat this, she's the strongest little girl, mommy and daddy just need to figure out these bits and pieces, and we will.”
Understanding Aria's Type of Eye Cancer
The term eye cancer can refer to any cancer that originates in the eye. Melanoma is the most common type of eye cancer, but the kind Aria has retinoblastoma happens to be the most common type of eye cancer in children.
This cancer most often develops in infants and very young children, and it rarely occurs in children older than 6. Overall, retinoblastoma is rare, but it accounts for about two percent of all childhood cancers with about 200 to 300 children being diagnosed with the disease each year in the United States. About 75 percent of children with retinoblastoma have a tumor present in only one eye (making it unilateral retinoblastoma), but another 25 percent will have both eyes affected (making it bilateral retinoblastoma). And, thankfully, more than nine out of 10 children in the United States with retinoblastoma are cured.
Retinoblastoma can also be inherited. Most children with retinoblastoma do not have a family history of the disease regardless of whether theirs is heritable or non-heritable but children with the heritable form have a 50 percent chance of eventually passing on the RB1 gene change that causes the tumor to their children. Children with the non-heritable form of retinoblastoma do not pass on an increased risk for developing the disease.
Symptoms of Retinoblastoma
Retinoblastoma is most often diagnosed after a parent or doctor notices something unusual about a child's eye.
The Impact of a Childhood Cancer Diagnosis on the Whole Family
Two of the more common signs and symptoms include:
- White pupillary reflex (leukocoria) the pupil appears white or pink instead of red when you shine a light in the eye
- Lazy eye (strabismus) the eyes don't appear to look in the same direction
Other less common signs and symptoms can be:
- Vision problems
- Eye pain
- Redness of the white part of the eye
- Bleeding in the front part of the eye
- Bulging of the eye
- A pupil that doesn't get smaller when exposed to bright light
- A different color in each iris (the colored part of the eye)
And if the cancer spreads outside the eye, symptoms can vary depending on where the cancer currently is. Symptoms for these scenarios can include:
- Loss of appetite and weight loss
- Headache
- Vomiting
- Lumps under the skin in the neck
It's important to note, however, that many of these signs and symptoms are more likely to be caused by something other than retinoblastoma. Even still, you should always bring up any of these symptoms to your child's doctor should they occur because the outlook for retinoblastoma patients is not as good if the cancer has had time to spread outside of the eye.
Advocating for Your Child
Here at SurvivorNet, we always encourage people to advocate for themselves when it comes to cancer and, more generally, health care. When it comes to a child, the parent must become the advocate just as we saw in the case above.
And even if you're called "pushy" or people dismiss the concerns you have for your child, it's important to remember that you never know when speaking up about a seemingly unproblematic issue can lead to a very important diagnosis cancer or otherwise.
Be Pushy, Be Your Own Advocate… Don't Settle
Figuring out whether or not you have or your child has cancer, based on possible symptoms, is critical because early detection may help with treatment and outcomes.
Seeking multiple opinions is one way to make sure you or your child is getting the proper care and attention. You should also try to remember that not all doctors are in agreement. Recommendations for further testing or treatment options can vary, and sometimes it's essential to talk with multiple medical professionals.
"Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn't work, what the next plan is," Dr. Zuri Murell, director of the Cedars-Sinai Colorectal Cancer Center, told SurvivorNet in a previous interview. "And I think that that's totally fair. And me as a health professional that's what I do for all of my patients."
Contributing: SurvivorNet Staff
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