We are very proud and rewarded by our Jenna's Rainbow Home Care Program, an innovative program at Beth Israel's Institute for Neurology and Neurosurgery. Often, after a child leaves the hospital, many of the support services needed to facilitate healing fall by the wayside.

This program, purportedly the first of its kind, funds a recreational therapist with the purpose of providing "after care" for children who have been treated for brain and spinal cord tumors and are currently homebound. This program is a way to ensure the extension of the meaningful relationships that develop between patients and Beth Israel's recreational therapists.

A Child Life Specialist (CLS) receives training that focuses on normal childhood growth and development as well as the effect of a hospitalization and/or serious illness on a child's behavior, development, and growth. The Child Life Specialist develops a series of home-based activity programs that help children cope with the effects of an illness and treatment. The CLS uses play and recreation to facilitate a child's cognitive, physical, and emotional functioning. Weekly visits provide the child with a familiar face in a familiar environment. The program seeks to provide therapeutic interventions in a fun, non-threatening way.

Children benefit from the ongoing care in areas of socialization, emotional support and therapeutic recreation - all important psychosocial aspects of healing.

Testimonial from Music Therapist Yelena Zatulovsky, MA,MT-BC

The Homecare Program

I have been very fortunate as a staff member at Beth Israel to be involved in the homecare program. With the many challenges a professional faces when entering the home of a patient, it simultaneously provides a greater understanding of that child's familial situation and an opportunity to apply therapeutic interventions into their everyday situations and common environment. To our excitement the parents have embraced the prospects of home visits and welcomed us with open arms.

I have had the pleasure of working with two families in these situations, both very different. In one case homecare offered consistency to the child, a baby, and family which reduced some stress and anxiety in future visits to the hospital. Concurrently, this allowed me to work within the confines of the home on tactile and auditory stimuli (the child is blind and thus the main focus is to work on those senses that are still intact to make up for the loss in vision). In the other case, all that could be done medically had been carried out and consequently the quality of life issues became essential. My visits offered support to the family, a place where they could speak freely, create an ambiance of safety and comfort to the child, and interact with the siblings during this stressful time.

I first met the baby (about six months old at the time) when he was admitted to the inpatient unit prior to surgery. Although a little apprehensive, his parents welcomed me in suggesting that music would be a comfort to their blind son. They commented that he didn't like to be touched, to be held, and was fearful of new voices. In the first few sessions, he was crying almost continuously, especially when anyone entered the room. Within the first few weeks, he became familiar with my voice, calming almost immediately upon hearing it. As our time together progressed, he began to allow me to touch his hands, he would hold onto my fingers, and move his feet towards me. He slowly grew to enjoy touch on his face, particularly around the eyes, and began showing his beautiful smile to all around. As my bond with the baby became stronger, his parents began to seek me out to soothe their child, and in turn, perhaps to relieve some of their distress.

Over the past several months, I have been seeing the baby through the support of the homecare program. Now over a year old, he is more outgoing and social. I have made several visits to the family's home in New Jersey as per their request. The entire family (siblings and parents) welcomes me warmly into their everyday lives. The visits with him have begun to include working on verbal and physical responses to a variety of musical stimuli that I create, including drumming patterns on the surface that he lies on (which often instigates him to mimic my rhythms with his legs). Singing with him as a form of social interaction, and play through music. Although delayed by his tumor, he has begun to truly act like "a real baby," as his mother often states. He smiles and laughs frequently, engages in exploring his surroundings, and loves to be held. Similarly, he has now started rolling over, and there is no question that crawling is in the near future for this lovely child. Working with him in the home has allowed me to offer more extended opportunities for our interactions and promote the motivation that he often finds through music to become more widespread in his day to day life. It has been, and continues to be a great joy and blessing to be able to facilitate music therapy in the home environment for this remarkable family whom I have grown to love.

The other child, a four-year-old boy, had spent several months on the inpatient unit while undergoing chemotherapy and radiation. After many attempts to engage him, he reached out for my guitar one day and began strumming the strings. His mother, standing in the doorway, began to cry. It was from that moment that my bond with him and her solidified. After all attempts, the family was faced with the difficult decision to cease treatment. As they began to prepare for their discharge, the mother became overwhelmed with the anxiety of caring for him herself without the support of the staff, whom she came to rely on and care for so much. It seemed most appropriate to then offer homecare to this family. When I requested that the mother consider my visiting at home, she quickly handed me the number and inquired how soon I could start.

Arriving at the house on the first day was tremendously difficult for all involved. In some sense, it signified the beginning of the end. Yet despite all this, the mother smiled, hugged me, and thanked me for suggesting the visits. Without fail, I arrived at the same time each week, until the time of his death, and would maintain contact with the family between visits. For the child, although unable now to participate as he had before, he was always soothed by the sound of the guitar, particularly during times of increasing pain, and would often allow himself to relax and fall asleep to the music. Visiting family and his brother would often sit silently in the room as I played to him, cherishing the moments when he was not focused on the intensity of the pain. They would cry, they would talk to me and express their fears and frustrations, and they would smile while looking at his peaceful state. In effect, it wasn't only the relationship and amazing connection with the child that was so remarkable, but the welcoming of the entire family and the trust that they placed in me. The mother's open reception to my presence extended far beyond the home. She entrusted me with her older son, who I offered to pick up from the home and bring to events offered by the hospital, such as the holiday party. It not only gave me the opportunity to intervene with him and offer a place in which he could speak without restraint about his younger brother's illness and possible death; but it also offered him the chance to socialize with other siblings and staff. Thus allowing him truly to be a part of the events that were taking place within the family. When death finally came, I was able to attend the funeral to show my support to the family. Although no words were exchanged, it was obvious that the connection we formed would never dissipate.

It is with many thanks to Jenna's Rainbow Foundation that these beautiful situations could come to be.

Yelena Zatulovsky, MA, MT-BC
Music Therapist
Beth Israel Medical Center