On April 6, Matt Neumann and Amanda Monteiro said goodbye to their 19-month old daughter, Edie, as she passed away from leukemia. As they mourned, Monteiro felt a contraction. Only 11 hours after Edie died, Monteiro gave birth to the couple’s second daughter, Eleanor.
“Edie literally told her sister, ‘It’s your time, now go,’” Monteiro, 36, of New York City, told TODAY. “The grief is sometimes unbearable. But you look at your new daughter and there is something divine in how it worked out.”
Neumann and Monteiro are sharing Edie’s story to raise money and awareness for pediatric cancer research.
“No one should have to watch their child die in a manner like that,” said Monteiro. “The only way to continue Edie’s legacy and memory is to help others.”
A bump becomes a sign of a serious illness
It began in July, 2017, a month after a first birthday trip to Spain and Morocco, where Edie played in public fountains and “flirted” with strangers. At first, she started acting oddly and stopped sleeping through the night, which puzzled her parents. At the same time, they learned Monteiro was pregnant again. Then, in October, Edie hit her head and developed a bump that never went away.
Emergency room doctors sent Edie home. The next day, she spiked a fever and started vomiting so her parents took her back. Again, doctors sent them home.
At a follow-up pediatrician’s appointment, the doctor hypothesized Edie’s symptoms were due to croup and teething. But over the weekend, Edie’s health quickly deteriorated. She stopped walking, talking and eating.
“We kept her in a bed between us and gave her syringes of Pedialyte,” Monteiro explained.
On Monday, they returned to the emergency room after noticing Edie’s belly was distended. Doctors discovered her platelet count was dangerously low — around 17. Normal blood platelet counts are between 150,000 and 450,000. Edie had cancer. What’s more, the bump on her head was bleeding into her brain.
“Her blood couldn’t clot. She had a 5-centimeter mass near her kidney and spleen,” Monteiro said. “She was so sick.”
When doctors tried a bone marrow aspiration to see if she had leukemia, they struggled because her bone marrow was stringy. Doctors suspected she had a neuroblastoma and they started chemotherapy immediately. But days later, doctors discovered she had acute megakaryoblastic leukemia (AMKL), a type of acute myeloid leukemia (AML) common in children with Down syndrome.
As she started her second round of chemotherapy, her belly swelled more and her blood pressure became so high she needed five hypertension medications.
“She was really, really sick,” Neumann, 35, said. “From October 9 to mid-January, we didn’t leave the hospital.”
After two rounds of chemo, though, Edie started improving, and doctors said Edie could return home.
“She was in remission and doing great,” Monteiro said. “We had really high hopes.”
During the third week of January, Edie returned for a third round of chemotherapy. On February 21, her blood tests showed no signs of cancer.
But this hope was short-lived. An MRI scan revealed she had cancerous lesions on her liver.
“It was so aggressive,” Monteiro said.
By March 5, Edie returned to the hospital and doctors performed another round of chemotherapy. They hoped if they eliminated the cancer in the liver, they could perform the bone marrow transplant. But that never happened.
“She just declined really quickly,” said Monteiro.
Edie went into septic shock and her liver started failing. By April 1, doctors said there was nothing they could do. Her parents tried making her comfortable.
“We had been telling her all week, ‘You can go, honey,’” Monteiro said.
Edie passed away on April 6 at 8:58 p.m. Only two hours later, Monteiro’s contractions started.
“I had just lost my baby, and I am in labor,” she said. “In less than 12 hours, we said goodbye to one daughter and said hello to another.”
A new start with a cause
As the family has been grieving and adjusting to life with a newborn, they have been raising money in Edie’s name. In two weeks, they have raised almost $64,000 for the Team in Training fund of the Leukemia & Lymphoma Society (LLS).
Dr. Gwen Nichols, chief medical officer at LLS, said more funding is needed for pediatric cancers, especially for AML, Edie's illness. Patients with AML have a 50 percent survival rate, while patients with acute lymphoblastic leukemia have an almost 90 percent survival rate.
"That is an area that obviously needs additional research," she told TODAY.
But Nichols sees hope in families like Edie's.
"(It's) just such a brave and incredible thing they are doing in the midst of their sorrow," she said.
As for Edie's parents, being advocates helps.
“We feel the need to be part of the cause — whether it is raising money, raising awareness,” Monteiro said.