BLOOMINGTON, Ill. (AP) — Jayvoni Jefferson, seated on his mother's lap and wearing flexible-frame prescription eyeglasses, reacted excitedly to a television program.
"It's BabyFirst TV," said his mother, Qyanna (Key-A-na) Jackson. "It's his favorite program because it's so colorful."
A few minutes later, Jayvoni, who turned 2 years old on June 4, was standing directly in front of the television and holding on to the table underneath.
"We don't know what he can see," Qyanna said. "He knows our faces."
"It's heartbreaking when a kid is sick," she said in their Bloomington apartment as Jayvoni watched television. Her mother, Annie Jackson, also of Bloomington, watched Jayvoni carefully.
"I just want Jayvoni to be healed," Qyanna said. "I want all children with cancer to be healed."
Jayvoni has bilateral retinoblastoma. Retinoblastoma is a cancer that starts in the retina, in the back of the eye. Bilateral means he has cancer in both eyes.
That's uncommon. His pediatrician, Dr. Kaye Harms Toohill of Bloomington Pediatrics & Allergy, said Jayvoni is her first patient with bilateral retinoblastoma.
There is a family history. Qyanna, 33, had it, as did her father, Willie Williams, 75, of Chicago.
Qyanna's right eye was removed shortly after birth and replaced with a prosthesis. Her father is blind.
Complicating matters is that Jayvoni also has sickle cell disease, an inherited blood cell disorder that requires close monitoring.
"Those are significant illnesses to have at once," Toohill said.
"That has complicated his treatments," said Dr. Janice Lasky Zeid, an ophthalmologist and medical director of ocular tumors at Ann & Robert H. Lurie Children's Hospital of Chicago.
Jayvoni is undergoing treatments at Lurie to control the tumors in both eyes by making them inactive, to save his vision and save his eyes, Zeid said.
"It's a difficult treatment course. He has had some response to treatment. Some tumors have responded (mostly in the left eye) but there hasn't been a complete regression of the tumors," Zeid said. "We are hoping to improve that over time. We are closely following him."
"I'm hoping they can remove the tumors without removing his eyes," Qyanna said.
The dedication of Jayvoni's family, especially Qyanna, helps, the doctors said.
"She has done a remarkable job," Toohill said. "She's a single mother but she never misses doctors' appointments here or in Chicago."
"They are a wonderful family," Zeid said. "They have been through so much but have shown a lot of courage through the whole process. She (Qyanna) is devoted to Jayvoni and makes everything work for him."
Jayvoni and his mother live in the apartment with Jayvoni's sister, Janesha Hampton, 11.
"Janesha doesn't carry the gene," her mother said.
After Qyanna, who relocated to Bloomington in 2008, was diagnosed with bilateral retinoblastoma at birth, her right eye was removed. Her mother said cryotherapy, laser therapy and radiation followed to save her left eye.
Cryotherapy uses extreme cold to destroy abnormal issue. Laser therapy uses heat.
Treatments continued until age 11.
While the treatments saved the vision in her left eye, not having a right eye results in imbalance at times, Qyanna said.
"Everything is a double take because I can only see with my left eye," she said.
Because of her prosthetic right eye, "it makes me look like I'm cross-eyed sometimes," Qyanna said. During childhood, she was teased by other children.
Jayvoni was born on June 4, 2014. He was diagnosed immediately with sickle cell disease and, shortly thereafter, with bilateral retinoblastoma when tumors were found in both eyes.
"I was devastated," Qyanna said. "I knew there was a chance but I was hoping he wouldn't have it because Janesha doesn't."
Jayvoni was referred to Lurie, where he was seen by Zeid, first as an inpatient, then as an outpatient.
Treatments have included chemotherapy, cryotherapy and laser treatments.
Jayvoni's current routine is two appointments a month with Zeid in Chicago to treat the eye cancer and two appointments a month with a sickle cell specialist at the St. Jude clinic in Peoria.
Sometimes, after cryotherapy and laser treatments, Jayvoni is so sick that he needs to stay at Lurie overnight. Generally, he's sent home with Tylenol with codeine to help to treat the pain and facial swelling.
Anesthesia medicine that Jayvoni is given so he can undergo cryotherapy and laser treatments sometimes result in seizures and erratic breathing during the drives back from Chicago, Qyanna said. Some of those episodes result in quick diversions to the nearest emergency department.
After treatments, he can't rub his eyes or take his glasses off, so his arms are strapped down for a while.
"He hates it," his mother said.
He hasn't been able to get his childhood immunizations — except for hepatitis B — because they could interact with his cancer treatments, Qyanna said. That puts Jayvoni at risk of infection.
That's why he takes penicillin twice a day. Other daily treatments include a cream to treat rash resulting from his meds and an anti-nausea medicine, Qyanna said.
Because he's at high risk of infection, Jayvoni seldom leaves the house. Most of his outings are for doctors' appointments and church on Sunday.
"He has had no significant infections, despite both diagnoses," Toohill said.
Because Jayvoni's sight is impaired, he walks off balance, his mother said. He recently got his prescription eyeglasses to strengthen his right eye but he doesn't like them and frequently takes them off.
"He bumps into things," Qyanna said. "I carry him a lot so doesn't hurt himself."
Qyanna, who was an assistant teacher at a day care, quit her job to care for Jayvoni.
"It's rough on him and it's rough on my daughter and myself," Qyanna admitted. "My mom helps as much as she possibly can but there are a lot of things we can't do because of his medical condition."
His left eye is considered stable because there are no new tumors, Qyanna said. But there are several active tumors in his right eye.
A possible future treatment is intravitreal chemotherapy, which means injecting the drug directly into the eye, Zeid and Qyanna said.
More traditional chemotherapy and removal of the right eye are other possible future treatments that doctors are trying to avoid, Qyanna said.
"At times, I feel like I want it to be over with," Qyanna said. "I just want him to be healed, to be cancer free. I want him to have a normal life."
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Source: The (Bloomington) Pantagraph, http://bit.ly/1Y4I19S
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Information from: The Pantagraph, http://www.pantagraph.com
This is an AP-Illinois Exchange story offered by The (Bloomington) Pantagraph.
