Rare eye cancer strikes toddler

She may have had a slightly lazy eye, according to her mom, but in looking at a picture of Madison Toombs -- innocent smile, bright eyes and golden locks -- one would have assumed she was the healthiest 2-year-old on the planet.

The reality was quite the opposite.

Earlier this year, Madison was diagnosed with retinoblastoma, a rare form of eye cancer, which experts say is most often found in young children.

"We were just hysterical," said Kathy Burton, of Shelbyville, of her only granddaughter's diagnosis. "You see things like this happen to other families, but you never think it's going to happen to yours."

Burton is trying to spread the word about the rare cancer in hopes that parents will have their children's eyes checked at the earliest age possible.

"If we had not found out, she could have died," Burton said.

Sad journey

Madison's journey with cancer began last Thanksgiving -- a day that ended up taking on a whole meaning last year for Burton, and her family.

Burton was celebrating Thanksgiving with her son, Tommy; her daughter-in-law, Christie; Christie's family; and the grandchildren, in Estill Springs, when someone noticed that Madison's eye looked "milky" in the sunlight.

Madison's parents immediately made an appointment at Vanderbilt to have their daughter's eyes checked.

Doctors at Vanderbilt did not immediately detect the cancer, but did decide to schedule Madison for an appointment to correct her lazy eye. To do so, doctors would have to reconnect her eye's retina to the cornea. Burton, being extremely close to her granddaughter, went to Vanderbilt for what seemed at the time like a relatively simple procedure.

Unexpected find

While correcting her crossed eye, doctors decided to do an MRI and a CT scan ... the results immediately changed everything.

"They found cancer," said Burton, in a quiet voice. "At that time it was only in 50 percent of that eye."

Vanderbilt recommended the family take Madison to Wills Eye Hospital in Philadelphia for a second opinion. One week later, Madison was there ... but the appointment did not end with good news.

"In that one week, the cancer had spread to 100 percent of her eye," Burton said. "It's not something you can see because it's in the back of the eye ... had we not noticed (her eyes being slightly milky in the sun) she could have died."

Rare disorder

Retinoblastoma develops in the retina, the part of the eye that detects light and color, according to Genetics Home Reference web site (www.ghr.nlm.nih.gov). The disorder typically develops in young children under age 5. It can be hereditary -- but is not always -- and about 250 cases are diagnosed each year. The most common sign of this disorder is a visible whiteness in the normally black pupil. Other signs include crossed eyes; persistent eye pain, redness or irritation; and blindness or poor vision, according to the web site.

If detected early enough, doctors can shrink the tumor without having to remove the eye.

Doctors are not sure when Madison developed the disorder, but they do know she was not born with it, Burton said. Burton also said Madison's immediate family is being tested to find out if the condition is hereditary.

Eye removed

While at Wills Eye Hospital, Madison's eye was removed and replaced with a coral ball shaped-implant. The implant, wrapped with the same kind of tissue that is in the lining of the eye, was attached to the muscle of her eye to keep it open. Madison will return to Philadelphia March 9 for a final procedure, a permanent implant that looks similar to a contact lens.

Burton said that insurance will not pay for the eye implant because it is considered cosmetic surgery.

"It can go to her other eye," Burton said. "It hasn't yet, but it could spread."

Finding strength

Burton says, through it all, her son and his wife are handling the situation well, thanks to their strong faith in God.

"They've been praying the Lord will give them strength," she said. "They're doing a lot better than the grandmothers have done ... I'm starting to feel more positive now. I was scared (when they were in Philadelphia) because I felt so helpless. You don't know what to do or say."

Christie Toombs, however, is quick to credit Burton with helping the family get through the difficult time.

"She has been there for us for whatever we've needed," Christie said. "Whether it's to watch our other boy when we've been out of town with Madison or taking off work to help me, she has been here for us."

More than anything, however, Burton wants to make parents of young children aware of this rare cancer.

"We thought it was just a lazy eye," Christie said. "We never would have dreamed it was anything more than a weak muscle."

To help defray the costs of the medical bills, accounts have been set up in Madison's name.

What you can do

To make a donation in Madison Toombs' name, visit Heritage South Community Credit Union, 763 N. Main St. (P.O. Box 1219) in Shelbyville.