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Welcome
by Bev Foster B.Mus, B.Ed, A.R.C.T., A.Mus
It was 1 p.m. on a Thursday afternoon in October 1997 and I remember it like it was yesterday. Rob and I were delighted to be welcoming our fourth child into the world, Josee Michelle. Things were moving along as they had during the three previous labours. But then the words “We need to get the baby out – now!” were uttered by the obstetrician. The urge to panic was obliterated by the urge to push. Once she was out, she was whisked away and taken to the NICU. I was not able to hold her and feel her against my own skin and I knew something was wrong. We discovered later that one of the complicating factors was hydramnios, a condition in which there is too much amniotic fluid around the fetus. I was horrified that I might lose her. Losing your child is every parent’s nightmare. I am grateful that Josee recovered and is a vibrant 11 year old today.
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Pain Management in Pediatric Palliative Care
Stefan J. Friedrichsdorf, MD, Medical Director, Pain and Palliative Care Program, Children's Hospitals and Clinics of Minnesota
This article has been reprinted in full with the kind permission of author Stefan J. Friedrichsdorf, MD and the ChiPPs Communications Work Group, NHPCO
The majority of the more than 14,000 children dying from life-limiting diseases in the USA each year suffer from pain during their last weeks of life. Data suggest that applying the World Health Organization principles of pain management results in good pain relief for the majority of children with advanced cancer; however less has been reported on the effectiveness of the WHO approach for non-malignant pediatric life-limiting conditions. The management of children with intractable pain remains challenging and requires an interdisciplinary approach. State of the art pain management in the 21st century requires that pharmacological management must be combined with integrative, non-pharmacological therapies to manage a child's pain and suffering effectively.
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Good enough
Merilee Brown, MD CCFP, Family Medicine Teacher, University of Toronto, Queen’s University, Rural Ontario Medical Programme, Recipient, Associated Medical Services - Mimi Divinsky Award
It started innocently enough with headaches. My four-year-old neighbour, David, was having headaches. Then he had blinding headaches: headaches that made him cry out in pain and sleep over 20 hours per day. He was taken to see his family doctor. He went for blood tests. His family doctor couldn’t find the cause of his headaches. He went to the pediatrician. He went for a CT scan which we were told showed nothing. The pediatrician said the headaches and the sleeping were behavioural. David kept getting worse. Then they saw another pediatrician who ordered another CT scan, which showed a baseball-sized tumour in his sinus cavity. Rhabdomyosarcoma. One in a million. They asked the radiologist to look at the first CT scan again — sure enough, the tumour was there, but in the sinus, not in the brain where the radiologist had expected.
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Navigating the Wilderness of Grief: Sibling Bereavement Support in a Children’s Hospice
Kathryn Nicholson, RN, MMT, RCC, Canuck Place Children’s Hospice
The grief experience is uncharted territory for most people – and there is no map to show the way. Families who have lost a child are under particularly intense pressure from within and from the outside world. The parents are usually exhausted and devastated. Changes in family dynamics, patterns, schedules and expectations often result in frightening uncertainty and chaos for the surviving siblings at the very time they are needing their sense of trust and safety in the world to be restored.
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Neonatal Pain
Suzanne S. Toce, MD, Medical Director Neonatal Intensive Care Unit, Gundersen Lutheran Medical Center
This article has been printed with the kind permission of author Suzanne S. Toce and the ChiPPS Communications Work Group, NHPCO
It is clear that newborns experience pain. Pain results in physiologic, metabolic, and behavioral changes. Untreated, severe, or prolonged pain increases mortality and morbidity. Why do health care providers ever perform painful procedures without providing analgesia? When queried about circumcision, those physicians not providing analgesia cited concern over risks of analgesia, perceptions that analgesia isn’t warranted or is ineffective, unfamiliarity with the techniques, and time constraints.
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Book Review: Tear Soup: A Recipe for Healing After Loss
Pat Schwiebert, Chuck DeKlyen, Taylor Bills (Ilustrator) Perinatal Loss: 1999, 56pp.
It’s hard to explain death and loss to our kids. Sometimes I’m not sure we give them enough credit for what they can understand and take in, even in some small measure. The authors of Tear Soup: A Recipe for Healing After Loss would agree and have created a story that walks children through felt loss that could include everything from the death of a family member or a pet to the loss of a prized possession. Loss is loss, and requires some form of grieving for emotional health.
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Pediatric Palliative Care Overview: Developments in the Field
Simone Stenekes RN, MN, CHPCN(c), Clinical Nurse Specialist, Pediatric Symptom Management and Palliative Care Service – Winnipeg Regional Health Authority Palliative Care Program Dr. Mike Harlos MD, CCFP, FCFP, Medical Director, Pediatric Symptom Management and Palliative Care Service and Winnipeg Regional Health Authority Palliative Care Program Physician Consultant, Canadian Virtual Hospice, Professor and Section Head, Palliative Medicine, University of Manitoba, Co-Chair, Canadian Network of Palliative Care for Children Chris Hohl MD, FRCPC, Fellow – Winnipeg Regional Health Authority Palliative Care Program Pediatric palliative care as a specialty is in its infancy. Within the last few years the area has grown both in program development and also in the areas of research and education. Within Canada, programs have developed that include inpatient consultation, home consultation and support through hospices. Each area of the country has distinct resources, geographic issues and also budgetary considerations when it comes to providing palliative care to children and their families.
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Rooms Around the World
Profiles hospices, hospitals, long term care facilities and people using or beginning to use music in therapeutic ways. If your organization would like to be featured in Rooms Around the World send us a picture and share a unique aspect of it with our readers. This issue: Zoo Trips: Palliative Support for Children & Families, Czech Republic
Meagan’s Walk: Creating a Circle of Hope, Toronto, Ontario
IWK Equipment Loan Program, Halifax, Nova Scotia
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Music Note
Music Note tells the story behind the songs on Room 217. Hugs & Kisses, Music for life’s journey Album, Bev Foster (Piano & Vocals), Beverley Johnston (Percussion), Playing Time: 55:01
Room 217’s Hugs and Kisses is an album intentionally produced for children under 12 years old. It is a journey of lullabies delicately woven together with voice, piano and all kinds of bells. Musicians Bev Foster (voice, piano) and Beverley Johnston (percussion) create a magical soundscape that shimmers with warmth and love.
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The Healing Power of the Music
Home to Newfoundland
Power of Song and Presence
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Room 217 Box Set of therapeutic music resources provides variety, convenience and easy storage. 
Click here to order.
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About CNPCCThe Canadian Network of Palliative Care for Children is a resource for those involved in the palliative and end-of-life care of children in Canada. This multi-disciplinary group is active in facilitating standards development, advocacy and education and also produces CNPCC Net News, a regular newsletter. 
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About POGO
The Pediatric Oncology Group of Ontario (POGO) works to ensure that all of Ontario's children with cancer have equal access to state-of-the-art diagnosis, treatment and required ancillary services, thereby providing the greatest prospects for survival with an optimal quality of life.
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About Memory Bridge
The Memory Bridge Initiative is a program that educates junior high and high school students about Alzheimer’s disease and related issues, pairing each student with a person living with Alzheimer’s disease. The program develops students’ emotional and social intelligence while keeping individuals with Alzheimer’s meaningfully connected to people in their community.
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About GAPMET Conference
The third international conference of the Greek Association of Primary Music Education Teachers (GAPMET) entitled: Teaching material and its contribution to educational practice: From theory to application in Music Education will be held in Athens, Greece, May 8-10, 2009
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About Center for Expressive Therapy
Using art, music, theatre, dance and other creative outlets children can outwardly express exactly how their illness makes them feel on the inside and enhance the healing process. The Akron Children’s Hospital incorporates creativity into care with their Center for Expressive Therapy.
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Poetry and Hums aren't things which you get, they're things which get you. And all you can do is go where they can find you. Velveteen Rabbit
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