DOWNINGTOWN—Last month, Amy Largent of Downingtown began planning for the funeral of her two-year-old daughter, Julia Adams. She and her husband Reed Adams took photos of her at the Children’s Hospital of Philadelphia and prepared to say goodbye.
A few months ago, little Julia was diagnosed with clival chordoma, one of the rarest types of cancer for children. It is a locally invasive tumor that arises in the base of the skull and spine. Chordomas are complicated tumors to treat due to the involvement of critical structures such as the brain stem, spinal cord, and important nerves and arteries. They can also come back, or recur, after treatment — usually in the same place as the first tumor.
At CHOP, Julia had surgery to remove the tumor and surgery to fuse her spine for stability. In December, she got pneumonia twice, had a brain infection and went through rounds and rounds of chemotherapy.
But after an MRI in January, doctors discovered the cancer was growing rapidly. In just five days, it quadrupled.
The doctors told us she had days to live,” Amy said, “and there was nothing more they could do. CHOP is the number two hospital in the world for pediatric cancer, and they have all the experts in the field. And they said there was nothing else they could do for her.”
Julia stopped responding completely in early January, shortly after Reed and Amy were given news that the cancer was terminal and nothing more could be done. Julia was completely motionless for weeks while her parents administered alternative therapies.
But then something amazing happened.
Back in November when Julia got sick, Amy began a day-to-day blog, and set up a Facebook page called Julia’s Fight Against Rare Cancer. It amassed more than 80,000 followers. Many began praying, and some formed a prayer chain when Amy announced on her site that her daughter was dying.
“She was getting prayers from all over the world,” Amy said.
Right before Amy’s father died of cancer on Nov. 8, 2018, she began researching alternative means of treatment. After her father died, she used that knowledge to apply it to Julia.
“I did research on alternative medicines that have proved to be very successful in brain cancers,” Amy said. “We threw Julia into progressive alternative therapies.”
After two rounds of chemotherapy in January, Julia became very sick in February. Given her age and the tumor’s location, doctors felt chemo was the best option. She was unresponsive and her pupils stopped dilating. But then in February, after doctors gave Julia’s parents the bad news and after yet another round of chemotherapy, she awoke and was alert, right at the time the prayers started.
“The doctors at CHOP were stumped,” Amy said.
For the past week, Julia has been vomiting often, but her parents are elated because she’s still alive. Reed hasn’t left CHOP since Thanksgiving, and is by her daughter’s side most of the time. Amy stays home to tend to the couple’s son, Gabriel, 1, and works when she can. But she visits Julia often.
“When Julia was sick, we certainly didn’t think it was cancer,” Amy said. “In hindsight, in October and November, she started to lose weight drastically and was sweating a lot, irritable an fussy. But they are normal toddler things. Her dyes looked funny, and that was a sign.”
Lindsey Burton, 19, who attends school at Missouri State University, came across Julia’s page and read every post in one night.
“I read everything,” she said. “It was so touching. I don’t know her personally, but everybody started praying. The doctors expected her to die, and to me that was crazy. It’s truly a miracle she didn’t die when they expected her to.”
An excerpt from Amy’s blog earlier this week:
“I did my first trach class today. I had to practice on a nightmare doll. Seriously, when they get worn out they probably go straight to Stephen King. I don't know why they have to make them so awful! We went over how to clean the stoma (an artificial opening that allows faeces or urine either from the intestine or from the urinary tract to pass) and how to change the strings. I practiced on a doll and I nearly puked. Ugh. So I guess we need to both earn a certain number of credits on Julia over the next few weeks - cleaning the stoma, changing the strings, suctioning, and listening to her respiration; until we're moved into the trach 2 class which I believe is learning to change the actual trach.”
A video on the page that shows a nurse singing "10 Little Monkeys" to Julia garnered more than 22,000 views.
“She’s smiling and laughing,” commented Val Melton. “Another one of our prayers answered.”
“The baby girl is going to grow up and change the world,” said Gina Demarco. “So inspiring.”
“This brought tears to my eyes,” said Katie Moore. “That sweet girl was definitely laughing. Praying for results from the scan, and to end vomiting.”
Reed has been unable to work full-time, but Amy said he is not unhappy at the hospital.
“He is a man of very few needs,” she said. “He has a place to sleep, he’s warm, he has food and WiFi and most importantly, he is right next to the love of his life.”
A GoFundMe site has been set up to defray expenses for the family. Both Any and Reed no longer can work full-time. A study released earlier this week by the American Journal of Medicine found that 42 percent of new cancer patients or their families lose their life savings in two years because of treatment. The average amount a cancer patient or their family loses was $92,098.
After tracking 9.5 million cancer patients from 2000 to 2012, researchers learned that 62 percent of all cancer patients or their families are in debt because of their treatment, and 55 percent owe at least $10,000. Overall, the total medical costs for cancer are $80 billion in the U.S. Even with insurance, it often does not cover all medical costs associated with cancer.
Since Julia is eligible for Medicaid because she has terminal cancer, the hospital bills should be covered. The bills have gone into collections, though until the logistics of payments can be figured out. So far, $109,728 has been raised of a $176,000 goal, and that money will be used to offset expenses because neither Amy nor Reed can work full-time. And it will help pay for some of the out-of-pocket expense for alternative treatment, which Amy feels is effective.
Both Amy and Reed have employers who are sympathetic to their situation and will hold their positions while they are caring for their daughter.
It will still be a long road to recovery for Julia, who faces six months of intense chemotherapy followed by radiation, but doctors are hesitant to perform radiation on a child so young. That will be followed by six months of less intensive chemotherapy.
“We don’t know what the future will be,” Amy said. “We are sitting in limbo right now. Julia has a long road ahead, but we are definitely headed in the right direction. It’s hard to be optimistic because she was in a very bad place in January. We watched her vitals go to toward death. But she’s with us, and it’s a miracle.”
The link for the GoFundMe is on Julia’s Facebook page, or it can be accessed here https://www.gofundme.com/JuliasFightAgainstCancer.