Navigating Serious Illness with Teens and Young Adults

Navigating Serious Illness with Teens and Young Adults

In this episode, Carol Bailey and her daughter Katie talk with child life specialist Heather Haluska about going through cancer during the teen years. Katie was diagnosed with acute myeloid leukemia when she was a senior in high school. She continues to deal with chronic health conditions related to her diagnosis. Katie shares how she handled missing out on teenage experiences, used creativity as an outlet, and learned to advocate for herself in medical settings. Carol discusses learning to take time for herself. Both mother and daughter highlight the importance of communication and listening, even when they could only communicate through eye contact.

A special thank you to our moderator, Heather Haluska, child life specialist at St. Jude; our parent caregiver, Carol Bailey; and patient, Katie Bailey.

Learn more about Katie’s diagnosis of acute myeloid leukemia (AML) on Together by St. Jude™.

This episode was recorded on 04/04/2024.

Episode Transcript

Narrator (00:02) 
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. St. Jude Children's Research Hospital 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. 

Heather Haluska (00:39) 
Parenting a teen going through a serious illness comes with its challenges. I'm Heather Haluska, a Child Life Specialist at St. Jude Children's Research Hospital. In this episode of Caregiver's Share, a St. Jude podcast, We focus on the development and parenting of teens and emerging adults. I'm talking with Carol Bailey and her daughter Katie about their journey. Carol and Katie, can you introduce yourselves and tell us a little bit about your journey? 

Carol Bailey (01:04) 
Hi Heather, I'm Carol Bailey, better known as Katie's mom, and she was diagnosed in 2019 at 17 years old. She had a form of leukemia which was called AML. After her first eight months of treatment, she relapsed after we thought she was in remission. So we started treatment back to prepare for a bone marrow transplant. In September of 2020, she had that transplant and is now cancer-free. 

Katie Bailey (01:42) 
Hi, I'm Katie. I'm 22 now. After my transplant, I experienced a severe reaction called graft versus host disease. This led to many chronic health conditions that I still deal with to this day. But I'm so grateful for the opportunities like this podcast that my mom and I get to share our experience with others. 

Heather (02:07) 
Carol, what did loving and parenting a teenager well during illness and treatment mean to you? 

Carol (02:14) 
I was so grateful to be able to be there. She and I started the journey and we're still completing it, hopefully to finish one day soon. But other families don't always have the opportunity to have a caregiver that can work as a team with the patient. 

At first, Mama Bear came out trying to figure out the medical lingo and deal with her pain and all the new treatments that she was. Being asked to do. It was quite confusing and I was trying to do my best to help my daughter. 

Over time though, she also became a part of the team and she worked with me and worked with the nurses and the doctors to be involved in her treatment plan. She wanted to be involved and that was her. Her way of coping with this new normal for her. 

But there were times when she would be too sick or too tired to be involved. And we actually developed a way of looking at each other to know when she wanted me to just make a decision or if she was too tired to handle people in the room. And I have to admit, I love that part of being her. Main caregiver so that we had that ability to communicate without verbal use. 

Heather (03:55) 
Katie, there are a lot of parents listening who are curious to hear from you. What was the most important thing your mom did to parent or love you well during treatment? 

Katie (04:04) 
I think the biggest thing my mom did to help love and support me through my illness was when she listened to me and helped me learn how to advocate for myself. 

When I was first diagnosed, I didn't always know how or want to make decisions on my own, but she was always there beside me, ready to step in when I needed my mom. 

Heather (04:25) 
Well, Katie, adolescence and emerging adulthood is often a time of life filled with possibilities and big ideas. Teens often dream about next steps, like living independently, going to college, or engaging in relationships. How did you cope with changes or delays in these opportunities as a teenager? 

Katie (04:45) 
This was honestly probably the hardest part of being in treatment. Since I was diagnosed my senior year of high school, I had a lot of big plans and many friends that I felt like were ripped away from me when I was forced to move away for my treatment. 

I found many different avenues to cope though. At times, all I wanted to do was distract myself from the situation, but what I found always benefited me the most. Was when I found ways to get outside of myself and help others. 

Heather (05:16) 
Carol, how did you support Katie as she experienced and processed any of these or other losses? 

Carol (05:23) 
Katie and I believe that in our Christian faith that God has a plan, and having that hope allows us to take the day-to-day circumstances and put it in a new perspective. We were able to pray together and cry together and understand that we were going to face the day not alone. 

We also had many opportunities to sit and talk, and I tried to do my best just to listen to her because I knew that she needed a listening ear being separated from friends and family. 

We also found that Katie had times when engaging in things that would help distract her from her current circumstances, like her artwork and music, would really benefit her and just take her out of the realm of being inpatient or being sick again. And that helped her. 

Sometimes we had to also remind ourselves that things like social media were not the best place to be while we were trying to focus on our current circumstances. And that was also a difficult thing during COVID in 2020 because of being separated from so many people. 

Heather (07:04) 
Carol. We can see that Katie's life experienced a lot of changes during this time, but how have your life experiences and plans changed through this journey with Katie? 

Carol (07:14) 
I believe the separation from family and friends was the hardest. I still had a 12-year-old at home and my husband at home, and we homeschool, so of course that was a challenge to continue her schooling as well as Katie's as a high school student. 

But we have learned so much, especially from others, that there are ways to create new experiences with family. And our care team made it definitely a family-centered treatment that allowed us to involve siblings and family in Katie's process of getting better. 

Now have new family goals that are also centered around Katie's abilities, and that is something that is a challenge to think about, but I believe that it's helped all of our family grow in seeing that there are many opportunities other than what people would call the normal. 

Heather (08:29) 
Now let's talk about family relationships. Carol, how has parenting a child through illness changed your relationship with your four girls? 

Carol (08:38) 
Believe it or not, it's brought us much closer, even with the distance between the treatment facility and home. Their unique personalities have filled the gaps in wonderful ways. One is helping family at home. One of my older girls is helping the family at home. One who is more science-minded helps me with decisions and Katie answering questions. 

But, of course, the best part is they are also supportive of Katie and me as we go through this process. And little notes and their love means so much. We try to stay in touch through video calls. And we always try to make time for family gatherings when we can all meet up. 

Heather (09:34) 
And Katie, how has this experience impacted your relationship with your mom? 

Katie (09:40) 
I would agree with my mom. Our relationship has grown so much stronger through this process. I feel blessed that we were already close to start with, but we've been through so much and so many difficult challenges together now. 

Sometimes it feels like we're more of a team than just a mom and daughter relationship. 

Heather (09:60) 
Carol, parenting outside of illness can be very difficult. Parenting teens during illness can be completely overwhelming at times. How did you extend your self-compassion and care while Katie was in treatment and you were juggling multiple responsibilities? 

Carol (10:16) 
I have to admit, I was not very good at taking care of myself at the beginning. It was a matter of feeling like I needed to be with Katie 24-7. 

But over time, I found that just getting outside was my break to breathe in. Process the thoughts and emotions I was feeling as well. Also, music was a good break. While she would be sleeping, I could put some earbuds in and just use that time to enjoy something else. 

I do highly recommend for everyone to find whatever, is there something where they can take time to process all that is going on within their heart and mind as well as trying to be supportive to their child. 

Heather (11:21) 
Katie, your mom has said she has learned to extend her self-compassion during this experience. What is something that cancer taught you about yourself? 

Katie (11:30) 
Well, growing up, my sisters always said I was the sensitive one. Which was their way of saying I was weak and whiny. But through this process, I have definitely learned just how strong I can be. 

I'm capable of facing any challenge, and I've learned how to speak up and advocate for myself, which has come to be very important now that I'm transitioning into the world of adult health care. Adult hospitals are much more complex and difficult to work through. I'm required to be much more aware of my own needs as well as stay on top of many aspects of my treatment. 

But I'm so blessed to have an extraordinary mom who stays by my side and is helping to support me through it all. 

Heather (12:20) 
Carol and Katie, we so appreciate your time today. Thank you for sharing your stories with us and helping others in the process. 

Katie (12:27) 
Yes, thank you, Heather. We both have enjoyed this opportunity to share our experience with others. 

Narrator (12:35) 
Thank you for listening to Caregiver's Share, a podcast lovingly brought to you by Patient Family Centered Care and Psychosocial Services at St. Jude Children's Research Hospital. 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. 

Season 2 Episodes