Navigating Serious Illness with School-age Children

Navigating Serious Illness with School-age Children

Elnora Lee describes her 17-year journey with 3 school-age daughters navigating cancer. She talks with Randy Thompson of the St. Jude Imagine Academy about learning challenges, relationship challenges, and the importance of having compassion and empathy. She offers tips for helping a school-age child retain multiplication facts and turning trips to the store into learning experiences. Elnora emphasizes the importance of setting the tone, being firm, and focusing on the future.

A special thank you to our moderator, Randy Thompson, STEMM coordinator, Imagine Academy by Chili’s at St. Jude, and our parent caregiver, Elnora Lee.

Learn more about brain and spinal cord tumors on Together by St. Jude™.

This episode was recorded on 08/05/24.

Episode Transcript

Narrator (00:01) 
A child's diagnosis of cancer or another serious disease is difficult. Families, guardians, and loved ones experience a range of emotions and often need support related to their child's diagnosis and treatment. brings you Caregiver's Share, a St. Jude podcast. Share stands for support, honor, advise, reflect, encourage. In this series, you'll hear stories and insights directly from the experiences of St. Jude families and care providers.

Randy Thompson (00:37) 
Parenting a school-aged child going through an illness can be challenging, to say the least. I'm Randy Thompson with the school program at St. Jude Children's Research Hospital. In this episode of Caregiver Share, a St. Jude podcast, we'll focus on the development and parenting of school-aged children. I'm happy to be talking with about how she navigated her children's illnesses during their school-age years.

Elnora, great to see you. Can you introduce yourself and tell us a little bit about your journey?

Elnora Lee (01:06) 
My name is Elnora Lee. I have three daughters, Jayla, Felicia, and Juliana. Jayla and Felicia were diagnosed in 2008. Juliana was later diagnosed in 2012. Jayla and Felicia both have optic pathway glioma. Jayla has a plexiform on her spine, and Felicia has an optic pathway glioma with a glioma on the side of her brain. Juliana has a brain stem tumor, an optic pathway glioma, and she also has hydrocephalus with a programmable shunt on her right side.

Jayla and Felicia are actually 19 and 20 years old right now. They're both in college. Jayla just had a little girl named Faith, and also Felicia is getting ready to start her second year of college. Juliana just turned 13 last week. She's in the eighth grade. Jayla and Juliana are still on treatment. Felicia is getting ready to go into her aftercare treatment. For the last 17 years, we've been at the hospital every week consecutively. On this journey with my children in treatment.

Randy (02:21) 
Elnora, what did loving and parenting your children well during illness and treatment mean to you?

Elnora (02:26) 
It meant everything to me because I wanted them to see themselves futuristically. I didn't want them to take their diagnosis for the now. I wanted to teach them that you can do this later. There is a future. You have a future. I wanted to teach them to always remain positive, always do your best. It may not seem like it's going to be a future, but I'm telling you there is. So I want to prepare you now for what you're going to do later.

Randy (02:58) 
When children are school age, they spend a lot of their time developing relationships with peers. But when a child is diagnosed with a serious illness, time with friends might change, especially when they're away from school or have to relocate for treatment. Sometimes medications also impact a child's immune system, making it difficult to attend large group gatherings like field trips or birthday parties. Can you tell us a little bit about how your children's peer relationships changed after they were diagnosed?

Elnora (03:27) 
Sure. After their diagnosis, Jayla and Felicia would create their own things at home. We called them birthday parties. We called them parades where they would just have their own. A party for themselves, all their different ribbons, snacks, cooks, cakes, candies, all of that. They would make it for themselves, so what they couldn't do outside the home, they would do it inside the home.

Got a little messy, but it satisfied them, so I was on the boat and on with that. We had good times because at that time, everything was shut down outside, so we had to create those things on the inside. So whatever made them happy was fine with me.

Randy (04:08) 
What were the most significant challenges they experienced, and how did you help them stay connected with their friends when treatment restrictions made it challenging?

Elnora (04:17) 
Well, luckily for us, most of their friends were in the hospital. They were the same age as them. They were in the same clinic as them. So most of their friends they would find, like, in the play area, waiting areas, things like that. They kind of grew together. And when they weren't there, they always had each other. So they would always speed off of each other.

And then my younger daughter, the longer the journey got, the taller she got. So they're all the same height. She doesn't know that she's not as old as them, but they kind of formed a bond together.

Randy (04:51) 
So, Elnora, as you've worked with their peer relationships, a very important facet is their learning. And learning can be more challenging when a child is sick or in treatment for a complex condition. And what was once easily achievable may become difficult. What was the most significant learning challenge that your girls experienced?

Elnora (05:11) 
Comprehension and retention, actually. Multiplication was very hard for my daughters. Because of where their tumors sit, it was hard to retain information for long periods of time. So I used a lot of repetition. I put on their walls in their rooms, it would be in the kitchen, the magnets on the refrigerator, flashcards in the car, flashcards in my purse, like everywhere.

Trips to the store became a learning experience, so to help them retain that information was a challenge.

Randy (05:41) 
Sometimes parents say that they feel guilty when their child is diagnosed with an illness, and it can be tempting to excuse or even ignore certain behaviors that you might not have otherwise permitted. This can even be harder when medications cause side effects like behavioral outbursts or other changes. With three girls going through this, how did you handle setting limits and disciplining when they were in treatment?

Elnora (06:06) 
I set the tone going in. I was stern and I was firm, and they knew that. I was a little harder on my children than most parents, but I knew what I wanted them to be in the future. I knew what I wanted for them. I wanted them to see themselves. Past their diagnosis. I wanted them to see themselves futuristically and not just in the moment.

So some days they did not like me, but I knew what I wanted for them. They didn't understand then, they understand now. But I wanted them to exemplify learning past your diagnosis, future, what am I going to do then? What do I want to be in my future? So what do I have to do now? To achieve what I want to achieve in the future.

Randy (06:54) 
Something about modeling for your kids. What did that look like in your journey?

Elnora (06:58) 
It looked like being what I want you to be, exemplifying, being that example that I wanted you to be. If I wanted you to be compassionate, I showed that. If I wanted you to be strong, I showed that. If I wanted you to take every day by the horns, that's what I showed. Even if those days were hard for me, I wanted you to see. That you can do it too. If mommy can do it, I can do it. If mommy can go through this, I can.

And that leads me to say this, that going in, I didn't know what they experienced, but I had my own experience where I was on chemo at one time. So I knew what it felt like for them to go to chemotherapy because I was now on chemotherapy. So some days I would take them to get hooked up to chemo and they would go with me to get hooked up. Some days I would get hooked up first and I would go with them. And through that experience is where the compassion came. And I wanted them to see if mommy can do it, I can do it too.

Randy (07:60) 
Elnora, you've shared about your girl's journey and thank you for sharing about your journey as well. Parenting outside of illness can be very difficult. Parenting a school-aged child during an illness can be completely overwhelming at times. You shared that you set specific expectations for your girls, you modeled for them, you set limits. All that was for your girls. Let's talk about you. How did you extend your self-compassion and care while your children were in treatment?

Elnora (08:32) 
The compassion for me was to be the parent that I wanted them to have, not just in word and deed, but to actually walk the walk. If you're not having a good day, then we're going to figure out what it takes for you to have that good day. Because it's still a day, whether it's good or not, it's still a day that you didn't have to have. So we're going to take it by force, by the horns, and we're going to run with it.

But having that compassion that I got through my own journey helped me have compassion for my children.

Randy (09:04) 
Elnora, our lives are a compilation of our journeys. What is one way that parenting children through illness has changed you?

Elnora (09:13) 
Compassion for the most part. Not just saying it, but being able to experience that. That's a different type of compassion. For me to have to go through their walk, I had to have compassion. When you go through it yourself, that compassion comes out of nowhere. We'll try it again tomorrow if we can't accomplish it today. Life does not have to be perfect. When you get through that day, then we go to the next. We live in the day we're in and not in the future.

Randy (09:44) 
Thank you, Elnora, for your time, intention, and openness today. We appreciate you sharing your experiences and your journeys that we know will help so many others.

Elnora (09:54) 
You're welcome. Thank you for having me.

Narrator (09:58) 
Thank you for listening to Caregiver's Share, a podcast lovingly brought to you by Patient Family Centered Care and Psychosocial Services. Please click like, leave a comment, or share this podcast with others who may benefit from the support. Visit stjude.org/caregivers-share for show notes and educational links related to each episode.

This podcast is for informational purposes only and does not render medical advice or professional services. This podcast does not establish a patient relationship between the listener and St. Jude Children's Research Hospital. If you have questions about individual health concerns, psychosocial needs, or specific treatment options, please discuss with your child's medical team.

Accuracy and availability of Caregivers SHARE: A St. Jude Podcast transcripts may vary. Transcript text may be revised to correct errors or match updates to audio. Audio on stjude.org may be edited after its original publication. The authoritative record of Caregivers SHARE: A St. Jude Podcast episode content is the audio record. 

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