“Coping with Cancer and Chronic Illness”
On Monday, Sept. 21, Dr. Emad Salman, regional medical officer, and Dr. Kim C. Shimoda, psychosocial program director from Golisano Children’s Hospital were joined by Cali and Carrie Trepkowski, a childhood cancer survivor and her mother, to discuss “Coping with Cancer and Chronic Illness”.
How we talk about the “C” word
Dr. Salman: Diagnosis and chronic illnesses like sickle cell, diabetes and others are similar and affect the family in the same ways. A cancer diagnosis is devastating and puts your life on hold for several years. After you hear “your child has cancer” you probably don’t hear anything else. At Golisano Children’s Hospital of SWFL, we have a team to guide families through the entire process, from diagnosis through treatment to long-term follow-up.
It takes a team approach
Dr. Shimoda: We use a multi-disciplinary team approach because we believe that treating a child with cancer or chronic illness requires a team effort. It’s not just about the medicine. With our team we:
- Educate kids and families about the disease.
- Help patients and families to be compliant and adhere to their treatment protocol.
- Support the entire family.
- The psychosocial team includes:
- Pediatric psychologist for coping and mental health.
- Full-time medical social worker who provides support and helps families with community resources to know what is available to them.
- Child Life Specialists focus on normal development and make sure everything we do is on kids’ developmental level. They help kids understand procedures and teach coping techniques. Child Life specialists are available for all patients in the Children’s Hospital, not just cancer patients.
- Nurse-educator to teach parents what they need to know during treatment and how to care for their child at home.
- Music therapist, hospital-based schoolteacher, patient technology specialist, and chaplain work along with medical team to focus on the child’s and family’s needs.
- The psychosocial team includes:
Why is it important to focus on mental health for children and their families facing life-threatening or chronic illness?
The goal is helping kids cope with stressors of diagnosis and treatment. The focus is on adjustment, making their long-term health and adjustment better for it. We try to prevent distress by predicting stressors and prepare families for what’s coming. Here are some of what we do:
- Teach pill swallowing, so it’s not stressful and easy to get children to take medicine.
- Educate parents about medicines and emergencies so parents are prepared to care for their child with a life-threatening illness undergoing treatment.
- Educate parents and patients about normal emotional responses (sadness, anger, frustration).
- Prepare for hair loss.
- Pay attention to siblings as they feel stress, too.
- Prepare children for school re-entry and help them continue through their education.
- Prepare families for the feelings associated with coming off therapy; there is security in being involved with a team and being on chemotherapy.
Why are routines and normal family activities so important for children facing life threatening or chronic illness?
Routines are important for coping. When everything in a child’s life has been turned upside down, it helps to focus on the things that are familiar and stay the same. We let children know we still expect them to behave, to do schoolwork, to be their normal self. It sends the message the child is the same child, just with an illness. We encourage kids and families to continue with their normal lives as much as possible.
What are things parents, caregivers need to watch out for that signals a child may not be coping well?
Look for a change in mood, sleep and sleep habits, appetite, decreased energy, increased fatigue and irritability, especially in younger kids. These can be symptoms of depression, but the difficulty is that each of those symptoms can be an effect of treatment and medications as well as a sign of changes in mental health.
What do you want to share with families facing chronic and life-threatening illnesses?
One of the things we want you take away from this panel is that kids are resilient. They cope well and do well with whatever we ask them to do, and we ask a lot of them. I have heard Dr. Salman tell families that they are part of our family now and forever, what that means is that when kids and families are here, this place is their place. I remember a young man who was in the hospital for a long time and celebrated his birthday in the hospital. He wanted a bicycle and he got a bicycle for his birthday, but he couldn’t take it home and ride it. When we were in the old hospital, he got to ride his bike around the fourth floor atrium. So did Dr. Salman and Dr. MacArthur. I think of him when I think of how this team addresses all those pieces of normal life.
We have little kids who have the run of the clinic; 3- and 4-year-olds march into clinic, climb into the chair to have their blood pressure taken, run down the hall and throw themselves around your knees to say hello. They are not scared, they are not distressed, this is their place. When we see that, that’s when we know we have done a good job.
Carrie, how did Cali’s diagnosis change your family?
When we heard she had cancer, I became sole caregiver of Cali. Her Dad took up everything at home with our three other children. He became Mom and Dad, and I was fighting to save our daughter’s life. Our family changed drastically. Our roles changed. Our children went through a lot. She has a younger brother, and she came home from the hospital on his birthday. Everyone was so consumed with Cali. There was animosity from our children because I was so wrapped up with Cali. The family did come to the hospital almost daily so we could have dinner together. Her older sister, who was 15 at the time started making lunches. It changed everything.
Why was it important to have Dr. Shimoda available to your whole family?
She calmed us all down. For Cali there were times she would feel things. She was scared. Dr. Shimoda helped with the fear and anger we all experienced.
Did you notice a difference when Cali had someone to talk to?
Children can’t express themselves as we can as adults. Cali was going through some anger and wanting to be alone. We created a board in her room that helped her communicate when she was ready to talk, when she needed to be alone, when she needed me, and when she needed her puppy to cuddle. Things like that helped us know what we needed to do. It is so important to have the mental health help for all of us. We all are affected. We will continue to be affected even after we are done with treatment and on the road to being cured. I can’t imagine not having that support and having someone to talk to. With any situation, seeing someone is very beneficial. It’s always harder to ask for help, but when you have it, you wonder why you waited so long.
Questions for Cali, pediatric brain cancer survivor:
Were you able to go to school after your diagnosis?
I tried to go back, but I kept getting fevers, so my parents decided I should take the year off. Carrie: She was hospital homebound for the first year of treatment.
Did you get to see your friends?
Some friends would stop by and visit me at the hospital and at the house.
Where there things you couldn’t do?
I was supposed to start dance, but I couldn’t balance. I couldn’t even ride my bike or my scooter.
What did you do with Dr. Shimoda?
We played games. We spent time talking about my feelings and my fears.
Were you scared?
I was scared, but I also knew I had a lot of support, so I wasn’t really as scared. My Mom helped me and my friends and family.
What happened when you lost your hair?
Some of my friends cut their hair for me. My friend said my head was like peach fuzz. My hair started falling out when we were on our way to Jacksonville for radiation. Instead of saying something about it, I just started taking it out and throwing it at my Mom and my Grandma.
After all your cancer treatment did you go back to school? Was it hard? What is school like for you now?
I went back to school a year after my treatment. I went back to 4th grade. I was lucky my mother was a teacher there, so I could go to her if I needed a break. I was lucky that my second-grade teacher was also my fourth-grade teacher. And then she followed me to sixth grade too. It felt like a normal situation, mostly. Right now, I’m going virtual school. It’s nice I can be at home and not worry about affecting my health right now.
Dr. Salman: Back in the 1960s and 1970s, most children diagnosed with cancer did not survive, so our focus was on survivorship. As treatments improve, survival for childhood cancers is now around 80-85%. Children who have gone through the treatment for cancer can also have long-term lasting effects, some of them physical, some of them may be anatomical, some of them may be chronic effects of treatment. PACE is the Pediatric After Cancer Experience Clinic at Golisano Children’s Hospital, which is a program to monitor the potential late effects of the treatment of childhood cancer. We monitor the long-term physical effects of chemotherapy. We also monitor the long-term cognitive effects by doing neuropsychological testing during and after treatment to see if we need to intervene with the schools.
Dr. Shimoda: Through the years we have been able to decrease toxicity of treatment while keeping the cure rates high. But we have found that children may have cognitive late effects on their learning down the road. With neuropsychological testing, we can do evaluations when kids are feeling well at the end of treatment to get a good baseline. When they come to our long-term survivor program later, we can check if there are changes in cognitive functioning or learning. The goal is to give the information to the school and ask for accommodations that are necessary for child to be their most successful selves in school.
We also focus on transition to cancer survivorship: has the child and family made the adjustment to life after treatment? Are they back to pre-illness family routines?
- Golisano Children’s Hospital Pediatric Hematology/Oncology
- Golisano Children’s Hospital Child Life Services
- Golisano Children’s Hospital Facility Dog, Dorian
- Rachel McCabe, Golisano Children’s Hospital school teacher
- Cali Trepkowski’s story
- Barbara’s Friends-the pediatric cancer fund of Golisano Children’s Hospital
- Clips for Cancer fundraiser for Barbara’s Friends
QUESTIONS FROM VIEWERS
Q: How can a family access these resources at Golisano Children’s Hospital?
Dr. Shimoda: Psychology tries to meet with the family at diagnosis. Different members of the psychosocial team will sit with parents at the beginning. The psychosocial team meets regularly to identify how each child is coping and what the family might need. Our patient technology specialist is new, and he has all the electronic gadgets (including Virtual Reality). He can develop good relationships with teenagers especially. For us, families can ask their nurse or doctor and we can make sure they have access to any members of the psychosocial team.
Dr. Salman: You can ask your doctor. We also have pet therapy with our resident dog Dorian who comes to see the kids and makes an enormous difference. We really try to address all aspects of a child’s well-being.
Q: Is it typical for a hospital care team to provide information about mental health resources when a child is in a home where a sibling or parent has cancer?
Dr. Shimoda: Within Lee Health, if there is a parent who has cancer, our Child Life teams can go and meet with those families at times to talk with kids. For our own program, we provide support to siblings, either individual psychotherapy or family intervention, or if they just need to sit down with Child Life and learn about cancer and what that means.
Dr. Salman: I also want to add that during the last few years, Golisano Children’s Hospital has worked hard to build our outpatient behavioral health services, so we are working with families on an outpatient basis with a team of psychologists and social workers, that are available to help families. A pediatrician can refer them.
Q: For Carrie: How did you talk to the other kids at home about Cali’s cancer?
Carrie: At first, we were told by Child Life to tell the kids that there are cells in her body that need to be taken out. The second you use the “C” word with children, it can be very scary. Unfortunately, my children heard the “C” word from other places. My daughter saw it on social media. My son was at school one day and they were organizing a race for Cali. A teacher said she was sorry his sister had cancer. I remember tucking him into bed and him asking me if his sister was going to die. It’s truly the hardest thing to have to talk to your kids about. We really tried to not use the cancer word. Now we realize our strategy wasn’t so great. I never imagined that kids could get brain cancer. In hindsight, I wish I had sat the kids down and told them it was cancer, but what we were going to do everything we could to make it through it.
Dr. Salman: These days, information is available at their fingertips, and I’d rather we tell them than let them find it on their own. What’s out there on the internet is a mixed bag. There’s good and bad information. The first thing we want to give is hope. There’s no blame. You didn’t cause this, but there’s a lot of things you can do to make it better. If we take care of Cali and the family is not doing well, who is going to take care of Cali when she goes home? We need to make sure we keep the family unit strong. When she’s in the hospital, we can watch her. When she’s with you, you are the eyes and ears, whether you ask to be on this team or not. We all work together. Through the years we’ve built strong relationships with our families.
Dr. Shimoda: We also pay attention to cultural differences in the c-word. We also make sure we say that childhood cancer is very different from adult cancer. A family’s experience of cancer may be for an adult, like grandma. We want to make sure we tell children and families that we expect you to get better.
Q: What are some tips for taking pills. My kids hate pills!
Dr. Shimoda: We developed a pill swallowing program. We have a kit with graduated sizes of capsules. We tell children to sit up straight. Take a sip of water. Swallow the pill. We use behavioral approach, sticking with one size capsule until they master that before moving on to the next size. We treat it as a skill to be learned. Then we have kids show to their parents this new skill they have learned. The youngest child we taught to swallow pills was 3. We start early, so it’s routine, just another skill you must learn.
Cali: At first, I couldn’t take pills. I was supposed to take a pill for nausea. I couldn’t do it. I couldn’t get it down. Now I take them without a problem.
Q: Dr. Salman: What about MRIs that are noisy and take a long time?
Carrie: She hasn’t had sedation since radiation treatment. Now she has to have two MRIs a year. She will go in that machine and be there without sedation for 3 and a half to 4 hours.
Cali: It’s hard. I don’t like getting the IV; I think that’s the hardest part of me. It’s hard because you can’t move your arm.
Dr. Salman: We have goggles, so kids can watch a movie during the procedure.
Cali: I tried using it two times before. I would fall asleep and wake up not knowing where I was and panic. Now I just listen to music and go to sleep.
For more information on childhood cancer and blood disorders: