Music to soothe the fears
About 17 months after Charlotte was born, she began sleeping more. The Cambridge toddler was not herself. She had a distended tummy, very little energy and her colour was off. Charlotte’s parents had taken her to see several physicians and no one quite knew what was wrong.
When Charlotte developed a fever in the spring of 2015, the paediatrician on call at Grand River Hospital ran a series of blood tests. That day Charlotte was diagnosed with childhood acute lymphoblastic leukemia, also called ALL or acute lymphocytic leukemia, a cancer of the blood and bone marrow.
This type of cancer usually gets worse quickly if it is not treated and Charlotte was immediately transferred to LHSC’s Children’s Hospital.
“We were told not to stop at home, but to go straight to LHSC,” says Christine Sarluis, Charlotte’s mom. “It was a stressful drive.”
Chemotherapy to treat Charlotte’s leukemia was started within two days, and she was an inpatient at Children’s Hospital for 16 days.
Once discharged, Charlotte needed to stay in London for blood work and chemotherapy every few days. Then, when she was able to go home, there were weekly trips to Children’s Hospital to continue treatment.
On July 31, 2017 Charlotte had her last chemotherapy session, marking the end of two years and three months of treatment.
“In my mind, I thought as she got older the hospital visits and treatment would get easier for her. But in reality, she became increasingly anxious, so much so that it affected other areas of her life and our lives. She became absolutely terrified of going to the hospital,” says Christine.
Music became the crucial link in her care and Christine remembers that first day when she met certified music therapist Karina Charczuk shortly after Charlotte arrived in hospital.
“Karina came to our room and asked if she could do some music with Charlotte. At the beginning she brought in shakers, she played guitar and sang to Charlotte. Instantly she responded to Karina’s soothing voice and calm nature. You could tell it took her away,” says Christine. “I was over the moon. Music has been part of Charlotte’s life since birth and at that point she was terrified, we were all terrified. It was an environment she didn’t know and the music was a welcome distraction.”
Soon enough, Charlotte started calling Children’s Hospital “Karina’s hospital.”
“We would send Karina a list of our appointments and she would always accommodate us. The consistency of her presence helped ease Charlotte’s anxiety,” says Christine. “And by easing Charlotte’s anxiety we as parents were able to relax. Karina is so comforting and supportive of the patient, and she takes her cues from us. She would ask what worked last time Charlotte was in hospital, what we might consider changing, and how she could best support us.”
Working with children of all ages at the hospital, Karina supports outpatients and inpatients from all six paediatric units.
“My role includes helping patients cope with being in the hospital or with their new diagnosis, support their rehabilitation goals, provide an emotional outlet and support their development. The patient doesn’t need to know how to play an instrument in order to benefit from music therapy. There’s a range of things that we can do in sessions depending on our goals and what the patient feels up to,” says Karina.
The relationship with Karina has been really important for Charlotte’s care and Karina is part of her treatment team.
“With Charlotte, we would meet in the playroom or the waiting room, and she would get to choose what we would do for our time together. We would start the session just before the procedure to help her relax and get comfortable in the hospital environment. Then for the actual procedure, Charlotte would sometimes want to hear me sing or other times she just wanted silence and we could resume the music after the procedure was finished,” says Karina.
Paediatric patients get to choose what interventions take place in a music therapy session. This gives the patient a bit of choice and control in an environment where they don’t often get that.
Music therapy is multi-faceted. Sessions can include interventions like singing or sharing music, improvising to reflect how we feel or how emotions sound on an instrument, song writing or recording.
“Sometimes it’s listening to music and what the lyrics are about, which often leads to deeper discussions. This is especially effective with teens,” says Karina.
For a patient who is palliative, especially if a patient is no longer responsive, Karina may play live music to help create a more soothing space for the family during an extremely difficult time.
“I also record the heartbeat of the patient so the family can have a part of their loved one that they can hold on to. That heartbeat often becomes the rhythm, the beat, of the patient’s favourite or special song that I’ll record,” says Karina.
Karina has a Master of Music Therapy degree, as well as Neurologic Music Therapy training and Neonatal Intensive Care Unit Music Therapy Training (NICU-MT), which allows her to work with very complex and delicate patients.
“Music therapy in the NICU is quite different from general paediatrics. I work closely with both parents and infants as young as 28 weeks and oftentimes parents are not yet able to touch or hold their babies. I teach parents to use their voices to support the infant’s development and bonding, to provide something very important for their child while empowering the parents at the same time.”
For Karina, working at Children’s Hospital is special.
“I love to see how children respond to music, they’re so excited. I also love working with the adolescent population which is going through a tumultuous time in their lives. Music is often part of their identity and close to their hearts.”
And she loves to see how her patient change and grow.
“Charlotte was very young when I became part of her care team. The first session she was shy and now she’s a different girl, she can play instruments and she is such a smart cookie. It’s neat to look back.”
A few months after her final chemotherapy treatment, Charlotte needed one last procedure – to remove the port for her blood work.
Removal was done in the operating room and Karina was there to support her that day.
“We were in the waiting room at 7 a.m. when Karina came in early to be with Charlotte. I couldn’t have asked for that. We were all very nervous that morning because Charlotte was so scared. Karina supported Charlotte in pre-admit and the waiting area, doing their music and that really helped distract Charlotte from the surgery ahead,” says Christine.
“Karina takes care of Charlotte’s emotional health and when I think of the entire care team, she is right there at the top. Without Karina, I don’t know where we’d be.”