When Your Child has Cancer – Dealing with a Diagnosis

Intro: MemorialCare Health System, excellence in healthcare, presents Weekly Dose of Wellness. Here's your host, Deborah Howell.

Deborah Howell (Host): Hello and welcome to the show. You are listening to Weekly Dose of Wellness brought to you by MemorialCare Health System. I'm Deborah Howell. Today our guest is Cindy Macfarlane. She's a registered nurse manager of the Jonathan Jaques Children's Cancer Center at Miller Children's Hospital Long Beach Outpatient Clinic. She's worked at Miller Children's for 26 years in both the inpatient and outpatient settings. As a registered nurse, Cindy provides information to help parents of children with cancer know what to expect and how to cope with a cancer diagnosis. Welcome, Cindy.

Cindy Macfarlane, RN: Good morning.

Deborah Howell (Host): Boy, am I glad they have you. Twenty-six years. I mean, you certainly know your stuff and I'm sure you've made so many families feel so much better.

Cindy Macfarlane, RN: Well, I love what I do and I love, love, love my patients.

Deborah Howell (Host): You know what, I've never even met you and I can just feel it over the phone. You know, a cancer diagnosis is especially devastating in a child. So what advice can you give to parents after they receive this difficult news?

Cindy Macfarlane, RN: Well, the first day is obviously a blur. The patient, once they hear that word cancer, most everything that the doctor says after that doesn't really register. So the first thing we want to tell the patients is this isn't the first time we're going to have a discussion. We're going to have lots and lots and lots of discussions after this. So let's just not panic. Do not panic. And I think the important message is that whatever, however the parent acts and perceives, the children are going to get a cue from that. So if you can somehow muster enough strength and bravery to face what's coming next, so can your child. And that is very, very important.

Deborah Howell (Host): Be a role model. What are some ways to improve coping for parents and families?

Cindy Macfarlane, RN: Well, the first thing is keep a notebook. So you're going to get a lot of material. You're going to get a lot of conversations with the doctor. Keep a notebook. Keep all the paperwork together in one place. Write down questions. Sometimes you might not have questions when the doctor is physically speaking to you, but later on in the night or the next day, you might have a question or a concern. Write it down. So that then when you do meet with any of the medical professionals, you have your questions in front of you and you can ask those questions and they can be addressed.

Deborah Howell (Host): Definitely keep a notebook. Keep a little notepad by your bed at night because often when you're trying to fall asleep, that's when those questions arise.

Cindy Macfarlane, RN: Absolutely, absolutely. So we really encourage that. And then we encourage you to bring that with you to every appointment, to every meeting that you have with the medical professionals. And then the second advice is to, you need to lean on people. And oftentimes, people think that, you know, I've got to be isolated, I've got to do this all by myself. You are never alone. Never alone. So pull your family in. Pull in your friends, your neighbors. Let them do what they need to help you. So we encourage maybe not everybody coming to the hospital and spending hours just sitting at the bedside, but maybe there's some things they can do at home to help you, or bring you new clothes, or take the other children to school. So it's very important to involve your support staff, your support system.

Deborah Howell (Host): Very good. Now what are some of the other things parents and families should be aware of when talking to their child about the diagnosis?

Cindy Macfarlane, RN: The first thing is we have to adjust everything that we speak to the child based on their age and maturity. So, you know, a young, young child doesn't understand some of the technical terms as opposed to maybe a teenager. But we try to be honest, we try to be up front. We try to not, we're not keeping secrets, but we don't need to give a lot of details or a lot of long-term information. Children usually want to know what's going to happen today and maybe tomorrow. And that gives them some reassurance. And then we can get through those two days and then we can work on the next two. And that's sort of how we approach it when we talk to children about the diagnosis.

Deborah Howell (Host): Okay, very good. Now it's also important for parents and families to consider contacting their child's school to tell them what's going on. So what do you recommend for families and how much do they share with the school?

Cindy Macfarlane, RN: Well, it is important for the school to know. Here in Los Angeles, you know, people keep attendance and you know, when the child's missing, it sends some red flags. So almost an immediate contact to the school is helpful for everyone. And then we have social workers and psychologists and people who can help the child. I mean the child is going to miss school, miss their friends. So we help them adjust from the hospital end, and then we just keep contact with the school as far as how long we think they'll be out and when would be appropriate to return. And if it's going to be a long-term thing, we do homeschool or independent study and we can help arrange all those things so the child doesn't miss really a beat in their education, which is very important.

Deborah Howell (Host): That's awesome. And what type of support is available specifically for children and families dealing with a cancer diagnosis?

Cindy Macfarlane, RN: We have a lot of support groups. We have a sibling support group, we have a parent support group, we have a teen support group. But initially, support group may be a little bit more than they want to handle at the initial diagnosis. It may be something that comes a little bit later. We do initially try if it's appropriate to connect maybe one family or one parent with another parent that has a similar child of age, similar diagnosis. They can sort of support each other through a crucial time. And then later when things are a little bit calmer and more adjusted and a little less intense, then we can invite them to the support group depending on the age and stage that they're in.

Deborah Howell (Host): Yeah, it's almost like a mentoring situation. Like, we've been there, we know, we'll get you through. It's so important to not face it alone.

Cindy Macfarlane, RN: Very, very important. And I think different cultures and different family backgrounds, you know, sometimes they think that this is something that we shouldn't share. But you're never alone because you always have the medical staff and the nurses and the doctors there to help you. But you don't know us like you know your friends and family. So I think it is important that you involve them and they want to help. Usually they're coming saying, 'What can we do? How can we help you? What do you need?'. And often times parents just, they're not really sure what they need or how somebody could help them. But let them, let them do what they're offering to do. And that really does ease the pain.

Deborah Howell (Host): That's such great advice. Will the child and the family ever return to quote-unquote normal after a cancer diagnosis?

Cindy Macfarlane, RN: Will the child go back to school? Almost for sure. Will the family get to go home to their house? Absolutely. Will they do the things that they used to do like go on family vacations and those? Absolutely. Will the normal be the same normal? Maybe not. There was something that triggered that initial visit to the hospital or visit to the doctor's office, whether it be a fever or child didn't feel good for several days. Everything is different. And every time that child or another child in that same family has those same symptoms, it is going to send some anxiety. And we know that, and we recognize that, but it is okay. And I would say almost always is never this again. But we understand that parents are more nervous, more vigilant in having their child checked by the doctor because they have this experience.

Deborah Howell (Host): And who can blame them?

Cindy Macfarlane, RN: No, of course not! And that's perfectly normal. And we recognize that, certainly as nurses, when we get a phone call from a parent, even if their child's completed their therapy and everything is okay now, "Oh he had a fever last night and I'm afraid." Of course they're afraid. And we recognize that. And most health professionals do.

Deborah Howell (Host): Before we run out of time, I do want to ask this question. Where can our listeners call if they want more information on the support offered at the Jonathan Jaques Children's Cancer Center at Miller Children's?

Cindy Macfarlane, RN: Well, we do have a web page which has a lot of information on it. And it is millerchildrens.org/cancer.

Deborah Howell (Host): Why don't we say that one more time, real slow.

Cindy Macfarlane, RN: Okay. millerchildrens with an s dot org backslash cancer. That has a lot of information about our support groups, about the different services that we offer. And then of course the phone number for the Jonathan Jaques Cancer Center is 562-933-8600. And people there could help you and direct you to questions and resources that you might need.

Deborah Howell (Host): Cindy, we thank you for 26 years and probably more than that, for your gigantic heart in this very, very poignant area in people's lives.

Cindy Macfarlane, RN: Well, thank you so much for inviting me.

Deborah Howell (Host): To listen to the podcast or for more information, please visit memorialcare.org. That's memorialcare.org. I'm Deborah Howell. Join us again next time as we explore another Weekly Dose of Wellness brought to you by MemorialCare Health System. Have yourself a wonderful, healthy day.