It aroused no real concern, as her family was on Christmas vacation with lots of other distractions. Only later did Holly's mother put together the hints that something was wrong with her daughter's eye.
A few days went by, and mom noticed redness and swelling, then a definite protruding of Holly's eye. This was serious. She was taken to the ER, and the physician on call thought Holly might have had trauma. But that was not the case. When she called Holly's pediatrician, mom Janice Slavin was told to take Holly straight to Children's Healthcare of Atlanta at Egleston. There, the team biopsied tissue, found a malignancy, and started chemotherapy right away.
Oculoplastics specialist and orbital tumor surgeon Brent Hayek was wonderful, says Slavin. "He sat knee to knee with our family and told us quietly and slowly about Holly's diagnosis, embryonal rhabdomyosarcoma or rhabdo, a cancer of the connective tissue and muscles, such as those of the head and neck." It is rare–with only 350 cases each year in the U.S.–mostly in children ages 1 to 5.
"He was so caring and informative, it really helped us during a very frightening situation," says Slavin of Hayek. And, over time, he remained a calming presence in this family's life. In spring 2009, Holly began radiation, in addition to her chemo. By June, treatments were complete, but in October, there was a new, larger tumor. By December, in order to save Holly's life, Hayek performed an exenteration, removing the eye and all the eye's orbital contents, including the eyelids. Such a procedure is daunting for any patient, much less a child. But when it was time for her bandages to be removed, Holly wanted to do it herself. All by herself. At the tender age of 6, she was brave beyond her years.
"I do a lot of things as an oculoplastic and orbital surgeon, but providing the surgical care and being a part of Holly's medical team was truly a rewarding experience," says Hayek. "These conditions are life changing for Holly, her family, and all medical folks that played a role in her life."
We can toss my hair outside. The birds will feel blessed to find my hair and use it to make a soft nest for their babies.
The Slavin family had an array of caring people in their lives to help themin dealing with their situation as well as resources to make frequent, fun outings with Holly while she was undergoing her treatments. This is not the case for many families. Many are stretched financially and simply lack the resources to provide needed downtime for their children. With a strong commitment to help others, the Slavins sought to help those families whose children must also undergo radiation treatments. They formed a foundation to raise funds for these special families.
Aptly named Radiation Vacation, it provides insider information for parents, tickets to special outings, and a special treasure box at Emory's Winship Cancer Institute. On the day of each child's last treatment, he or she gets to ring a special bell lovingly placed at Winship, courtesy of Radiation Vacation.
As mom Janice says, we were becoming aware of these needs as Holly went through treatments. Holly's comment about losing her hair spurred the first fundraiser, "The Blessing of the Birds." When mom became sad about Holly's hair loss, Holly quickly replied, "Oh, we can give my hair to the birds for their nests!" Participants of "The Blessing of the Birds" fundraiser were area hair salons who donated $1 per haircut to Radiation Vacation. Over time, several other events throughout Georgia have helped raise money.
Meanwhile, Holly is now a seventh grader, an honor roll student who won the citizenship award at her school last year. She had no idea when she made that heartfelt remark to her mother about her hair loss that a wonderful blessing for others would come out of it for years to come. More information: facebook.com/radiationvacation.