Lily, just 19 months old, was born with neuroblastoma, a malignancy that occurs along the nervous system tissue and is most commonly seen in the adrenal gland.
At birth, Lily had a rash called blueberry muffin purpura, found in infants with infection or clotting problems.
Dr. Jie Guo, pediatric neonatologist, was present at Lily’s delivery at Scott & White Memorial Hospital and had seen the rash on a baby in California born with neuroblastoma.
In Lily’s case the malignancy had spread to the placenta and another tumor was discovered in an additional adrenal gland, a condition that has proved fatal in the 11 documented cases reported in English language publications. The last documented case similar to Lily’s was in 1997.
After a year of multiple surgeries and hospitalizations, things are looking up for Lily.
No alarms were sounded when Lily had her latest CT scan on Wednesday, so her parents, Rodney and Kristen Dobert, are feeling good about their youngest daughter’s health.
“Her cancer appears to be in remission and she hasn’t had any chemo in six months,” Dobert said.
In that time, Lily has managed to train her siblings R.J., 5, and Madison, 3, to keep her entertained. Lily pushes her toy cart around the house, throwing out the plastic Dora the Explorer cards her brother and sister keep returning to the cart.
She no longer goes to physical therapy. Her parents were told Lily will walk when she’s ready.
“She’ll stand and take a couple of steps before she sits down,” Mrs. Dobert said.
Lily scoots across the floor, having grown tired of crawling. Luckily the floor is tile, making the process easier.
The therapists were surprised by Lily’s motor skills and her ability to hold a pen, Mrs. Dobert said.
“She gets so serious when she’s trying to write,” she said of Lily, who was clutching a small spiral notebook and a pencil.
According to the Doberts, Dr. Arlynn Mulne has said the cancer is not expected to return. Mulne is a Scott & White physician specializing in pediatric hematology/oncology and is Lily’s primary physician.
There are no guarantees.
“Lily has surprised us before,” Mrs. Dobert said. “The doctor did say later on there may be side effects of the medications and chemo.”
Dobert, an Army specialist with the 1st Cavalry, plans to separate from the Army soon. He’s from New York and wants to live closer to his family for a while.
“We’re trying to find a compromise,” said Mrs. Dobert, who is originally from Austin.
Dobert, on leave from Iraq, returned to Fort Hood for Lily’s birth.
“I was suppose to go back, but when it was discovered Lily was so sick my unit told me to stay home,” he said.
Lily’s doctor appointments had been once a month, but are expected to drop to every couple of months unless something unusual happens.
Lily hasn’t had any immunizations and won’t be able to get them until a year after her last chemo treatment.
She has become something of a poster child for Children’s Miracle Network. Posters of her that had been on display in Cefco, Goody’s and Boston’s The Gourmet Pizza decorate the Dobert’s living room.
“It’s been nice the last few months … no hospital stays,” Dobert said.
One of Lily’s habits, which her parents are trying to break, is her inclination to go to anyone.
She’s used to be handled by multiple individuals, including all of the doctors, nurses and technicians who have provided her medical care, Dobert said.
“We’ll be in the grocery store and she’ll see anyone and want to be held,” he said.
Mrs. Dobert has been keeping a journal about Lily since a couple days after she was born and can be read at www.caringbridge.org./visit/lilyreneedobert.
