For Craig and Cyndi Waters, the small moments of parenting – pushing their little girl on the swings, watching her run to catch the school bus, smiling as she dances with joy – are all the more precious because, with each one, they celebrate a milestone. Their daughter, Victoria, is a first-grader with a wide grin, an amazing laugh and a love of ice skating, cheerleading and being a girl scout. She is also a cancer survivor and the recipient of a heart transplant.
Mom Cyndi says she and her husband have discovered, through their young daughter, what it really means to “live life.” Victoria has overcome several medical crises since her birth – five weeks premature. But, today her health is good, and her parents are grateful.
“We have learned so much about the power of love and of hope,” Cyndi says. “From the care Victoria received when she was first diagnosed with cancer, to the support showered on her when we were told her heart was failing at age 4, we have been humbled.”
With each challenge, Victoria’s family has surrounded their child with care and loving support. Joining that circle of care are what she calls “the skilled doctors and dedicated nurses” from Levine Children’s Hospital, who have worked with Victoria since day one.
Victoria’s fight began in the first days of her life in the neonatal intensive care nursery at Levine Children’s Hospital, in Charlotte. At one month old, she was diagnosed with acute myelogenous leukemia (AML), a fast-growing cancer of the blood and bone marrow. Cyndi describes the diagnosis as “a kick in the stomach.” But, she and Craig focused on educating themselves about what their baby would face, and they leaned on one another, family members and their doctors for support.
“The reality of what she was physically going through broke our hearts,” she says. “During the first week [of treatment] we couldn’t hold her due to the amount of fluid she was receiving. That was the hardest thing as parents; not being able to comfort her. The image of her in the bed is forever etched in our minds.” But once that first critical week was behind them, Cyndi and Craig took Victoria into their arms and “only put her down at night when it was time for us to rest as well.”
The side effects of such aggressive cancer treatment also weighed heavily on Victoria’s parents. Her physician team at Levine Children’s Hospital was wary of one particular side effects of her aggressive cancer treatment. “The thing that I was most concerned about was the effect of one of the medications on her heart,” says Daniel P. McMahon, MD, pediatric hematology/oncology at Levine. “Young babies who receive the type of chemotherapy that she had are at higher risk for cardiac dysfunction.” While her aggressive chemotherapy regimen was successful in beating the cancer, her heart function had been diminished by the treatment. But the little girl continued to fight – and her family and doctors were right alongside her in that fight.
Coming Out Stronger
In the summer of 2009, Victoria’s cardiac team determined it was time to consider a heart transplant at the Congenital Heart Center at Levine Children’s Hospital. On Jan. 8, 2010, Victoria received her new heart.
Victoria’s heart transplant was successful, and she made an exceptional recovery. The surgical team was very optimistic about the outcome of the transplant, and eight days following surgery, Victoria went home with her mom and dad.
“The cardiac team didn’t just treat our daughter; they treated our family,” says Cyndi. “They were attentive to our needs and gave us confidence in their ability to care for our child.” And, she says, her family grew closer. “Craig and I held onto each other tight through this. We cried in each other’s arms. We made numerous trips to the third-floor [hospital] chapel to pray. We fought this battle as a family and came out stronger.”
A Bright Future
Victoria continues to see a team at Levine Children’s Hospital’s Congenital Heart Center, as doctors monitor her cardiac health with regular heart tests and biopsies. Cyndi also says her daughter has “rock star status” with her primary care pediatrician, Stephen K. Mange, MD, from Davidson Clinic. “All of our doctors are wonderful, and Dr. Mange makes sure that if we need to see him, he is available to us,” Cyndi says.
For Dr. Mange, Victoria’s “rock star status” is firmly rooted in his belief that Victoria’s story is one that offers hope to other families. “Victoria and her parents have been on an amazing journey – but not an easy journey,” says Dr. Mange. “Her parents are very articulate regarding her medical challenges. She is now an active and upbeat child.”
Like grade-schoolers throughout the Carolinas, Victoria is enjoying the long days of summer and is especially excited for summer camp. For the third year in a row, she will attend Camp CARE, a weeklong camp for children in the Charlotte area who have, or have had, cancer.
“For so long, Victoria had no energy because of her low heart function,” Cyndi says. “It is a beautiful thing to see her living life to the fullest, instead of sitting on the sidelines just watching.”