GALLOWAY TOWNSHIP — Lisa Jackson is praying for a miracle.
A recent trip to Disney World in Orlando, Florida, with her 4-year-old daughter, Antonia Miles, provided a temporary escape in magic, sunshine and make-believe, but the reality of the young girl’s inoperable brain cancer was a reminder that life is filled with true darkness.
Jackson, a single mother, said as bleak as the outcome looks, she will never give up hope.
“She really is a sweet girl,” Jackson said. “We have our days, but really, we’re hoping that her treatments work and that she’ll be free of it one day.”
Miles is among the 10,000 children, on average, younger than 15 who receive a cancer diagnosis in a single year, according to the American Cancer Society. Jackson received the news in 2016 that her daughter had diffuse intrinsic pontine glioma, or DIPG, a type of cancer that originates in the brain stem.
DIPG is considered rare and is inoperable because of its location and mass structure. An estimated 200 to 400 children in the United States receive a diagnosis of the disease each year. After decades of research and advances in pediatric cancer treatment, little improvement has been made for DIPG.
The prognosis for children today is similar to that of more than 50 years ago, including astronaut Neil Armstrong’s 2-year-old daughter, who died from the disease in 1962.
“As a pediatric neuro-oncologist, it’s one of the most devastating tumors we see,” Dr. Pratiti Bandopadhayay, of the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, told the U.S. National Cancer Institute. “We have no curative treatments at all for these tumors.”
Toy cars, dolls, stuffed animals and play sets are scattered throughout Jackson’s living room. While Antonia can no longer walk or crawl to get to them, everything is brought to her as she sits on the couch, propped up with a pillow.
Jackson looked at old pictures of the little girl with curly brown hair and bright eyes. She remembers her “bug” walking and running around just like any other toddler. By September 2016, that all changed.
A daycare director and family friend noticed Antonia’s speech development was not progressing normally. Jackson said her daughter started to become irritated daily and suddenly started to stumble when walking.
After several trips to Miles’ pediatrician and an emergency room visit for accidentally choking on food, experts directed Jackson to Cooper University Hospital in Camden, where doctors found Antonia had DIPG.
“They sat me down in a room with about 10 people in there and I said, ‘Is my daughter going to die?’” Jackson said. “I told them, don’t beat around the bush. Just give it to me straight. And they showed me what a normal child brain scan looked like versus Antonia’s, which showed a tumor near her spine.”
Jackson had just returned to work not long before that, but had to quit to care for her daughter full-time.
The location and complexity of these tumors have made it difficult for researchers to understand them, experts said. Dr. Michelle Monje, assistant professor of neurology at Stanford Medicine in California, is among a national team of doctors trying to find ways to cure or slow the progression of tumors such as DIPG.
“There is an urgent need to find a better therapy for gliomas, and I think that we are now pursuing an avenue of research that holds great promise,” Monje told the U.S. National Institutes of Health in September after outcomes in a recent study.
Frequent trips to Children’s Hospital of Philadelphia, radiation treatment, testing, medications, home-care medical equipment and a DIPG clinical trial at an oncology institute in Monterrey, Mexico, has cost the Galloway Township family more than $75,000 out of pocket, Jackson estimates.
But there is no price she can place on her daughter’s life, Jackson said.
Jackson created GoFundMe accounts more than a year ago to raise money to help pay for the treatments Antonia needs, and said the community has been extremely supportive in those continuing efforts.
“People have helped and really gotten to know and care for her. I’m very open with everyone about what we’re going through and what treatments Antonia is getting,” Jackson said. “With this treatment, we’re hoping that scan reads negative one day. I know she can do it, because she’s strong.”
After the clinical trial proved unsuccessful, Antonia has entered her last round of radiation at CHOP.
Discussions about end-of-life care and decisions are no longer on the horizon, but right in front of Jackson, who has been in addiction recovery for more than five years and credits her daughter with saving her life.
“I hold onto hope every day, because she’s all I know,” Jackson said. “I’m all she has, so I dedicate my life to making hers as happy and memorable as possible. I can’t imagine my life without her. I have been sober since she came into my life, so I have loved, laughed, cried and felt every moment the both of us have shared. That’s a miracle in itself. She’s a miracle.”