Dealing with daughter's cancer is a family undertaking

Dec. 12--Like any other 7-year-old, Dover's Audrey Ramirez likes to play, particularly if it means going outside, and she enjoys days exploring with her family.

But Audrey can't do many things of the things most children do. Under treatment for an aggressive form of leukemia, her parents must limit her contacts with other people, meaning she can't attend public school, and trips away from home must be carefully choreographed to protect her health.

Audrey's diagnosis of acute lymphoblastic leukemia, or ALL, was made in April, said mom Ashley Jones. Because her daughter is autistic, she never could tell her parents where she hurt, she only could cry when in pain.

"She really couldn't communicate with me about what was going on," Jones said.

Seeking an answer, Audrey's pediatrician earlier this year sent her on what was to be the first of several trips to the A.I. Dupont Hospital for Children. In time doctors made the ALL diagnosis.

The news shook the Ramirez's and their extended family. Audrey's dad, Richard Ramirez, who is stationed at Dover Air Force Base, was called home from an overseas deployment.

"He hadn't been gone two or three months, and they got him back over here," Jones said. "It all happened so quickly."

Audrey's treatment regimen got underway immediately. She was diagnosed on a Friday and started chemotherapy the following Monday.

The family, which includes Audrey's 4-year-old brother Mason, realized that while the little girl's physical health might depend on her chemotherapy and other treatments, her mental wellbeing -- and their own -- was just as important.

"We're pretty private, so at the beginning we didn't venture outside the family for help," Jones said. "We discovered that wasn't the best of ideas because we were keeping ourselves in a little bubble. Then our social worker at the hospital introduced us to Casey Cares."

About Casey Cares

Beginning in the bone marrow where blood cells are produced, ALL is a form of leukemia that can kill within months if not treated. In the United States, it is the most common cause of cancer death among children.

The good news is that it often can be cured with chemotherapy, and survival rates top 90 percent. But treatment takes time, and time can be the enemy when the stresses of caring for a sick child start to affect the family.

Almost two decades ago, volunteer Casey Baynes was visiting a hospital when she overheard one child tell another he wished he had developed cancer because of all the special attention and presents cancer patients received.

That sparked a sudden realization: "I found there are resources for children with cancer, but not for others who also were fighting for their lives or for their families," she said. "I realized we need to take care of the sick child and also we need to take care of the family so that they can battle for the child."

With this in mind, Baynes founded the Casey Cares Foundation, making its mission one of helping all acutely ill children -- not just those stricken with cancer -- and their families escape, at least for a little while, some of the burdens they must face every day.

"When you look at these kids who are literally battling for their lives, they're absolutely incredible," she said. "They're determined. They take it in stride. They still giggle and still smile, and while it may be a little harder to get that giggle or smile, they take it with grace.

"I believe that's how we best help them," Baynes said, "by giving them a reason to help them get better."

Depending on donations, volunteers, corporate sponsorships and even gifts of stock, Casey Cares arranges family outings ranging from going to the movies or a major trip to a sporting event. Working out of its Baltimore headquarters, Casey Cares operates throughout the Mid-Atlantic and in parts of the Midwest.

Everything is provided at no cost to the family, Baynes said.

Even so, it took a little time for the Ramirez family to accept help from Casey Cares.

"At first we were afraid to take Audrey out anywhere," Jones said. "We kind of sheltered her because we were afraid of exposing her to something. It took a while for us to get out of that zone."

For their first excursion, the family received passes to the Port Discovery children's museum in Baltimore.

"Just seeing them was a push for us," Jones said. "If they hadn't sent them, we probably would not have gone and done it."

Audrey didn't want to go at first, but soon warmed to the idea.

"It reminded us we needed to get her out of the house and be a family again," Jones said.

Other trips have followed, including one to the Adventure Aquarium in Camden, N.J., where Audrey delighted in having her picture taken with the mermaids.

Trips depend on results from Audrey's white cell count, which determines how well she could fight off an infection, and how she's feeling that day. Sometimes they'll go even if Audrey is feeling "a little yucky," her mother said.

A long journey ahead

For now, Audrey is just at the beginning of what could be a two-year or longer journey toward being cancer-free.

"At first it was hard to explain to her what was going on," Jones said, adding her daughter is taking the chemo and its effects -- including the loss of her hair -- in stride.

Audrey also has a port implanted in her chest that's used to administer her cancer-fighting drugs.

"It was pretty traumatic for her at first, but now she's very protective of it and it's very special for her," Jones said. "She even passes people and shows it off."

Audrey also understands she's different.

"She knows she can't be around other people who are sick and she knows she can't get other people sick," Jones said. "She was concerned about that at the first."

Being able to get out and open Audrey's horizons even as she deals with a serious disease has proved an invaluable boon for the Ramirez family. And having Casey Cares there to help and encourage them along has been a godsend, Jones said.

"Sometimes we can get into a really dark place dealing with this, and having them there to lift us up is very helpful," she said.

___

(c)2018 Dover Post, Del.

Visit Dover Post, Del. at www.doverpost.com

Distributed by Tribune Content Agency, LLC.