How a Mom Copes with a New Diagnosis

Kim Ray is an insightful mom, who recalls the first time she noticed that something was wrong with her daughter, Kinsley.

“She was restless,” Kim says. “She had been out with her aunt and uncle for the weekend, but we knew that something was wrong when she was ready to go home.”

Fortunately, Kinsley’s dad, Julian, is also a nurse. He noticed that Kinsley’s heart rate was too high and that she had a fever. After a trip to their local emergency room, they got the news that Kinsley had a fluid-filled mass between her heart and lungs. Further testing showed that she had T-cell lymphoma, a type of non-Hodgkin lymphoma.

After the fluid was removed from Kinsley’s chest, she wanted to go back to being a carefree kid. At one point, she even asked her mom, “Why are you crying?” 

Working through the shock of a new diagnosis

A cancer diagnosis impacts not only a patient’s life, but that of their whole family. In the early days after a diagnosis, it can be hard to navigate the emotions, manage expectations, and reach out for help as your child is diagnosed, starts treatment, and deals with the side effects of treatment.

Kim remembers how she felt right after getting the news that her child had cancer.

 “You are in a state of shock,” she says. “Hospital staff are talking to you, and you are trying to comprehend it. It takes a minute, but you also want to act fast.”

Kim wondered if she could have noticed Kinsley’s illness more quickly. Many parents falsely blame themselves when their child is ill, but they need to manage these feelings.

“You can’t beat yourself up,” Kim says. “Kids don’t want you to know that they don’t feel well, so they try to push through.”

It was hard for Kim to talk about Kinsley’s diagnosis at first, especially while she was still working through her own feelings. She reached out for help when it felt overwhelming.

“When we first got the diagnosis at the hospital, we called the people who would want to know,” Kim says. “I asked the doctors to explain it to them.”

The early days of treatment were hard.

“At first you are just a walking zombie,” Kim says. “Even if your child is sleeping, you are not sleeping. Or, even when you do finally go to sleep, you are exhausted.”

These feelings are common when learning how to support a child during illness.

Managing expectations of family and friends

Kim started to adjust, telling other parents, “Take the time and process it. You’re going to be exhausted. If you have a village, set your boundaries with your village. Don’t be surprised if those who you thought would be there are not. Don’t worry about that in the beginning. This is something I had to learn.

“Some people that I thought would be there were,” she adds. “But I also didn’t realize that they were nervous. They didn’t know what to do or say, but as a parent, you don’t have time to deal with those emotions. So, take your village as they come.”

Friends and family might not want to talk about a new diagnosis at first, but Kim has learned to manage her expectations and consider that others are dealing with their feelings of the diagnosis too.

“You have to realize that some people really love your children,” Kim says. “Then this happens, and you realize they pull back because they are scared too. Take them at whatever capacity they can be there. Don’t let you own emotions and expectations get in the way.”

Reaching out for help and setting boundaries

There are times when parents need to ask for help—but they can do so with boundaries.

“If you need somebody, you have to be vulnerable,” Kim says.

Parents can also ask for some space to deal with what they can handle at that time.

“I’ve actually had to tell friends to call me back,” she admits.

At other times, she has had to warn people who want to visit but cannot handle it well. “If you don’t have yourself together emotionally, you can’t come,” Kim says.

Learning how and when to invite others into your child’s cancer journey will come as you learn to communicate your needs.

Dealing with treatment and side effects

Kinsley’s diagnosis happened right after she finished kindergarten. She handled chemotherapy well, but the more intense treatment affected her mood and behavior.

“It was very rough; this was a child we didn’t know,” Kim says.

The staff at the hospital assured Kim that this was part of Kinsley’s treatment journey and to be expected.

Kim advises other parents, “Be very attentive. Don’t get lax about anything. Notice if they are sleeping too much.”

She also warns that a child’s appetite and taste may change during treatment.

“They might get stuck on one thing for a week,” she says. “Kinsley was stuck on eating macaroni and cheese, and tortilla chips. The staff told us she was craving salt. So that was one of the side effects.” 

When Kinsely went back to school, she was concerned because she had lost her hair.

Kim got creative.

“I crocheted her a hat, and then I put 2 ponytails on it,” Kim says. “She wore the hat so much that I made her another one. Then Kinsley had 2 or 3 different hats, and she named them. She went back to school and was fine. The school worked with me about everything.”

Kinsley is now back in school full time. She and her parents have adjusted.

When Kim and Julian bring their daughter to the hospital for checkups and treatments, they see themselves in the faces of other parents.

“We both look at each other, thinking, ‘That was us,’” Kim says.

She says she wants to help other parents walk through this journey too, so they can get support.

“I told my friends that once I get through this, I want to be an advocate,” Kim says.