Couple raising money to save daughter’s sight
Posted on Thursday, October 2, 2008
COURTESY Eleanor Suttle, the 21-month-old daughter of Clayton and Meredith Suttle of Fayetteville, has been diagnosed with bilateral retinoblastoma, a form of cancer afflicting both of her eyes. A new procedure known as proton radiation may help treat Eleanor, but the Suttles need to raise $ 70, 000 for the operation.
To save their daughter’s vision, Clayton and Meredith Suttle must raise $ 70, 000 in one week.
The couple’s 21-monthold daughter, Eleanor Rose Suttle, was diagnosed with cancer in both eyes, also known as bilateral retinoblastoma, on June 13, 2007. Since then, she’s been in treatment at St. Jude’s Children’s Research Hospital in Memphis, Tenn., undergoing countless rounds of chemo and laser therapy.
During the past few weeks, the Suttles’ nightmare returned, as did their daughter’s cancer. As part of a last resort effort to save the little girl’s vision, doctors recommended immediate proton radiation. The $ 140, 000 treatment isn’t covered by the family’s medical insurance provider.
“ The hospital would do it for free if they could, but it costs them money too, ” Clayton Suttle said. “ They’re already offering us a 25-percent discount. We just have to come up with the first half of the money before they begin treatment. We’ll come up with the rest before they finish. ”
The Suttles ’ fight with cancer has been an uphill battle since the beginning. The couple first noticed signs of the disease when their daughter was about 4 months old.
“ We noticed a white reflection in her eyes with flash photography, ” Clayton Suttle said. “ It was kind of like the red eye that some people get in pictures, only it was white. ”
After three visits to the pediatrician, the Suttles were referred to an eye doctor in Fayetteville. His initial suspicions of bilateral retinoblastoma were confirmed by a doctor at Barnes-Jewish Hospital in St. Louis. A visit to St. Jude’s in Memphis provided the family with final confirmation, bringing their biggest fears to life.
Doctors ordered Eleanor undergo six rounds of immediate chemotherapy. The 6-month-old miraculously completed the treatment without sustaining secondary complications.
Despite their daughter’s success, the Suttles’ difficulties were far from finished.
During the next year, the family made countless trips between Fayetteville and Memphis. Visits were scheduled three weeks apart so doctors could examine the little girl under anesthesia to determine the best course of treatment. Cryotherapy, laser treatment and carboplatinum injections were among the procedures she endured.
“ Carboplatinum is the same thing as chemotherapy, ” Clayton Suttle said. “ She had three rounds in each eye, which is basically like pouring battery acid into your eyeball socket. ”
Though the treatment initially seemed to work, it didn’t prevent microscopic tumor seeds from planting in Eleanor’s eyes and forming tumors from her blood supply. Doctors continued using harsh treatments to prevent further growth.
“ By the grace of God, we were able to calcify the seeds and tumors, which means they died, ” Clayton Suttle said.
For the next several months, doctors at St. Jude’s continued using noninvasive laser treatments to prevent more tumors from forming. The treatment proved to be effective until a few weeks ago, when tumor seeds began to reappear.
“ They lasered them again, but they weren’t able to control everything, ” Clayton Suttle said. “ There now seems to be more reoccurrence in both eyes. Our cancer and eye doctor said the seeds were still growing and that it was out of their scope of treatment. They recommended we move into radiation, which is what we’ve been trying to avoid. ”
Because of its harsh side effects, the Suttles feared the impact of traditional radiation treatment on their 1-year-old daughter. They then learned of a new procedure called proton radiation.
“ In the past, they would have removed her eyes, ” Clayton Suttle said. “ But science has come a long way since then. Proton radiation treatment has a 92 percent success rate with fewer risks than the old school radiation treatment. ”
The procedure enables doctors to have more control over the depth of radiation.
“ They can make the beam the size of the tumor, ” Clayton Suttle said. “ It enables you to spare more of the brain, pituitary and thymus glands, while protecting the bone structure in the face. She may still have some cosmetic damage with the swelling of bone growth around the face but nothing severe. ”
Proton radiation therapy is only offered at six medical facilities across the country. The nearest clinic, located in Bloomington, Ind., is a 10-hour drive from Fayetteville.
“ We’ve driven there once already for an initial consultation, ” Clayton Suttle said. “ They were very reassuring as to what they could offer. Right now, we’re scheduled for anther evaluation in Memphis on Oct. 8, and on the 9 th, she’s scheduled to have an initial CAT scan in Bloomington. They’ll also build a mask. That’s when the staging starts. We’ll move the whole family, including our other daughter, to Bloomington for about six weeks. ”
The proton radiation treatment is tentatively set for Oct. 20. During the fiveweek procedure, the Suttles ’ daughter will undergo 25 radiation treatments. She must also undergo anesthesia for five days in a row during the 25-day period, excluding weekends.
“ It sounds devastating, but it’s not like we walk around with a big dark cloud hanging over us, ” Clayton Suttle said. “ We’re happy. To see Eleanor, you would never know anything’s wrong. She’s more advanced than most 2-yearolds, especially her speech, attitude and love for life. ”
The Suttles, who own the Greenhouse Grille in Fayetteville, are currently seeking support to help fund their daughter’s treatment. Donations are being accepted at all Bank of Fayetteville branches and can be deposited in an account established in Eleanor’s name. Donations can also be mailed: Eleanor Suttle, c / o Clayton and Meredith Suttle, 1798 Viewpoint Drive, Fayetteville, AR 72701.
“ The word has spread so fast thanks to e-mail, ” Clayton Suttle said. “ We’ve even had people from Canada calling to offer support. The outpour of help has been amazing. We’re believers in God, and we know he will take care of us. We find a lot of peace in that. ”
For more information about Eleanor Suttle, visit the family’s Web site at www. caringbridge. org / visit / eleanorsuttle.
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