By Sabina Mollot
It wasn’t even two months ago when Damon and Kana Cleveland, residents of Peter Cooper Village with two young children, got the news no parent wants to hear. Their three-year-old daughter, Ever, had leukemia.
The diagnosis came as a complete shock. In the months prior, there had been only hints something was wrong. Ever, who normally loved going to the playground or out to ride her bike, would begin to complain of getting tired on the way. At the time, Damon thought nothing of it.
“I thought she was just being a two-year-old,” he said. “Challenging.” He would just tell her to keep walking.
Ever would also get sick a lot with colds and coughs at her nursery school, but this too seemed normal enough.
Then, one day in March, she got a high fever and coughed a lot. But Damon, who’d just begun a new job as an IT project manager, wasn’t alarmed until the toddler told him, “Dad, I’m not walking right. I want to go to the doctor.”
He added, “For a two-year-old, it was weird. They don’t want to go to the doctor.” And she wasn’t kidding. “She had this weird, staggered walk.”
Ever ended up at the emergency room at New York Presbyterian with her mother in the wee hours of the morning on March 17, where doctors delivered the news after doing a blood test. Damon, at home with the baby, learned about the diagnosis, Acute Lymboblastic Leukemia (ALL) over the phone at 4 a.m., before zooming over to the hospital.
At first, Damon said, he could barely focus on what doctors were telling him. “I’m hearing ‘womp, womp, womp,’” he said. But then, “They said it’s curable.”
Damon, who describes himself as an optimist, said he simply clung to that information over the next 28 days, when Ever was subjected to intensive chemo treatments. Following that period, the family still had to make frequent trips for further treatment, which includes somewhat painful weekly spinal taps. Ever also has to take several different medications throughout the day at home, some administered via syringe. Still, her father said she’s been handling it better than most adults would.
“She’s being a real champ and she’s getting better,” she said. The medicine, he added is expected to change over the course of the treatment, which he’s been told will last over two years, including a maintenance period of over four months.
The other week, the family got a scare when Ever got an angry-looking rash on her chest, which doctors were unable to explain, though it’s slowly disappearing. She also, early on in her treatment, would get nauseous, but medicine has helped with that. She later went on to eat a lot, which is an effect of the steroids she was taking, and gained eight pounds. This along with some swelling, left her with a much rounder face, a condition commonly known among cancer patients as “moon face.” She also currently has a port in her chest, which is used at home to administer medicine in lieu of an IV.
“It’s been hard and it’s only in the second month,” said Damon.
However, there’s been no change in Ever’s behavior, who told Town & Village she enjoys playing with dolls, and has a pink princess tent in her living room. Damon’s noticed that Ever’s become a little more needy, though this could just as easily be due to the fact that she’s now a big sister. The other night, when Kana was putting her now three-month-old son Shiloh to bed, Ever asked her father to do the same for her. In response, Damon told her he needed to work, but she wouldn’t accept that answer.
“She said, ‘Someone needs to pay attention to me,’” he said. “That’s a learning curve for us. We have to manage this a little bit more.”
Ever’s little brother, meanwhile, has been given a clean bill of health.
“Leukemia is not hereditary. It just happens,” said Damon.
Meanwhile, the Clevelands are trying to raise $65,000, to cover the costs relating to Ever’s condition that insurance doesn’t, like meals they’ve had to eat out while camped out at the hospital. Then there are the frequent cab rides back and forth to the hospital, and at around $15 each two or three times a week, said Damon, it adds up. However, the doctors have advised against having Ever use mass transit. They also instructed Ever’s parents to keep her out of any situations where she can be exposed to sick people, and this also means giving her a bedroom of her own. The family currently lives in a one-bedroom apartment, so the Clevelands need to move soon, though ideally remain in Peter Cooper or Stuyvesant Town. The family’s doctors have recommended staying close to the hospital, though Damon said they had considered leaving the city, where they could get more space for the same rent. A hefty rent increase for a larger apartment isn’t an option since Kana is a stay-at-home mother.
Another expected cost in living increase Damon and Kana have factored in relates to a strict, new diet Ever must adhere to, which means all foods must be just-prepared. “We have to know where the food is coming from,” said Damon. “No French fries that have been sitting around for hours. She can’t have a burger from McDonald’s.”
Even certain fresh fruits are off limits due to a lack of peels, because they’re more likely to come in contact with bacteria. This means bananas are okay while grapes and berries are not. Ever can also still enjoy hot dogs since her parents just remove the skin.
“Leukemia isn’t the real problem; viruses and bacteria are,” explained Damon.
Ever can still play with friends, though the Clevelands are wondering whether or not she should return to school in the fall.
“She has a lot of friends and they can come and play, but we have to make sure no one has a sickness,” said Kana.
As for Ever’s unusual name, “I came up with it,” said Damon, while Kana gave Ever her middle name, Rin. Damon said he knew he wanted to give his daughter a unique name in part because of her mixed race. Damon is black and Kana is Asian. Damon had been looking up non-traditional baby names and Ever “jumped out.” Rin, meanwhile, means strength in Japanese, and Ever has stayed true to it.
“For a three-year-old, she’s being a real rock star,” said Damon.
As of Town & Village’s press time, the Clevelands were able to raise more than half of the funds they believe they’ll need for out-of-pocket expenses, $38,597 out of the $65,000. To help them reach their goal, donations can be made online at their GoFundMe page.
While it is still early in her treatment, Dr. Alexander Aledo, Ever’s doctor and director of the Pediatric Oncology Program at New York Presbyterian’s Komansky Center for Children’s Health, said so far she is doing fine. He also confirmed that the majority of children with ALL are cured, while also adding that the disease is pretty rare.
“The most common cancers in adults, colon, breast, you might see 100,000 (cases) a year. With pediatric cancers, you see roughly 14,000 a year in the United States,” Aledo said.
However, he also warned that pediatric cancer can be tough to spot for the same reason it wasn’t obvious with Ever. The symptoms, a fever along with limpness, can also be blamed on countless other conditions, and not necessarily anything serious.
“It starts with garden-variety symptoms,” said Aledo, “and they persist or they sort of snowball and it becomes obvious that there’s something going on. There are no symptoms that are unique to leukemia. A lot of patients’ problems have been going on for two to three months and it doesn’t mean that the pediatrician dropped the ball or that the parents dropped the ball.”
Because of this, he added that he warns families, “Dr. Google is the enemy. People don’t usually post good news and it’s easy for parents to get frightened.”
For more reliable information about cancer, Aledo recommends the site cancer.gov.