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Water for life

placeholder June 8, 2009   •   VOL. 47, NO. 11   •   Oakland, CA

The George Mark House in San Leandro offers a home-like setting for terminally ill children and their families.

George Mark Children’s house at risk of closing

The George Mark Children’s House in San Leandro, the first free-standing palliative care house in the U.S. for children and their families, is feeling the painful bite of the economic recession. Unless it raises $2 million with definite prospects of substantial future donations, it may have to close by the end of the year.

Kazzy the Camel visits George Mark House several times a year.

Oncologist, psychologists
co-founded home

By Sharon Abercrombie
Staff writer

Kathy Nicholson Hull, a clinical psychologist, co-founded the George Mark Children’s House as a memorial to her two brothers. Mark Nicholson died in an auto accident in 1962 at age 16. George Nicholson died of cancer in 1969 at age 30. The three siblings are the children of Bill Nicholson, a graduate of Santa Clara University, who taught civil engineering there and received SCU’s alumni humanitarian award five years ago.

George’s and Mark’s deaths were devastating for the Nicholson family. The tragedy influenced Kathy’s choice of profession. She earned a Ph.D. in clinical psychology to help other people who were suffering the grief of family illnesses and death.

While Hull was doing postdoctoral work with families in crisis at Oakland Children’s Hospital, she met Dr. Barbara Beach, a pediatric oncologist. The two discovered they shared a similar dream to open a hospice for children with complete medical, emotional and spiritual care for them and their families.

While their dream percolated and took shape, Hull and Beach, along with another working colleague, John Golenski, a clinical psychologist, initiated a pediatric care service at Children’s Hospital. Golenski, a former Jesuit priest, had also helped found Harvey’s Gift, a children’s hospice, with Judith Dunlop, a nurse. Golenski served as executive director of the George Mark House from July 2004 until February of this year. Dunlop, an Episcopal priest, is presently George Mark’s clinical program director.

When Hull and Beach decided to look into the possibility of starting a full-standing hospice for children in the East Bay, they researched existing pediatric hospices in England, Canada, New Zealand and Australia. One of their visits took them to Helen House, a facility which has been operating near London since 1982. It ultimately became the model for George Mark House. The San Leandro House opened with funds from the Nicholson family.

Soon after opening its doors five years ago, George Mark House became well-known among East Bay Catholic organizations and schools. Catholic Charities of the East Bay has referred families with seriously ill children to George Mark. Holy Angels Funeral and Cremation Services have buried the children of impoverished families. Several parochial schools — St. Joseph in Alameda, Assumption and St. Felicitas in San Leandro and Our Lady of Grace in Castro Valley — sponsor fundraisers that have raised a yearly total of about $8,000.

“That’s a lot of cookies,” noted Rose. “Kids instinctively get what we are about.”
Founded in 2004, George Mark House receives no federal funding and very little state and insurance reimbursement. Last year, small contributions were up, but several large, regularly counted-upon donations shrunk by half, causing a drastic shortfall in operating funds, said Judith Dunlop, clinical program director.

It costs $5 million annually for the home to operate, said Teri Rose, director of community relations. To maintain services, but at a reduced level, the home has already cut several jobs. The remaining 61 full- and part-time employees took voluntary pay reductions. “This is about more than our jobs. George Mark is our passion,” said Rose.

Earlier this spring, after a public plea through the media, contributions flowed in, narrowing the deficit. But a substantial deficit remains and fundraising efforts are in full force, including another public appeal for donations.

During the past five years, 129 children have died at the George Mark House, while another 257 youngsters and their families have been admitted for either palliative, transitional and/or respite care. Referrals come from doctors, nurses and social workers. Children who stay at the home suffer from cancer, birth injuries, cerebral palsy, or a host of other life-limiting conditions.

Although there are other similar children’s facilities in the United States, George Mark House is the only one which provides care not only for a dying child, but also for an ill child who needs an interim between hospital and home.

Families who need a break from the intensity of continuously caring for a seriously ill child at home can bring the entire family to George Mark House for a few days just to hang out in one of the two family apartments set up to accommodate them. If there is space available, families can check in to the apartment several times during their child’s illness.

At George Mark House, sick children also can stay for a few days while their parents take time for themselves. “Sometimes the mom and dad will choose to go to a family wedding. Or they just might go home to sleep around the clock,” said Rose.

Because of the budgetary shortfalls, George Mark House is able to provide services to four families instead of eight.

Every family in residence has available to them a full spectrum of medical and psychosocial service, pain and symptom management for the sick child, as well as emotional support for everyone. Family pets are welcome.

A life-sized Labrador sculpture stands sentry inside the front door, prompting visitors to smile with delight.

Kazzy the camel comes to George Mark from the Lyon Ranch in Sonoma a few times a year to be with the children. “You should see how graceful she is when she comes inside,” said Rose. “She’s learned how to turn around in the children’s rooms without knocking over anything.”

At George Mark House the hospital rooms don’t look like hospital rooms — medical equipment is hidden behind moveable pictures. The walls are decorated with murals of horses, moons, stars, and magic forests.

Comfort and support at every level is the reality at George Mark House for Children. Clinical program director Judith Dunlop, who is an Episcopal priest, has discovered a special calling at the George Mark House. “This is deep and sacred work, not just for me, but for the majority of the staff as well. It is a privilege to walk alongside the parents to help make this hard journey towards their children’s death a little less lonely.”

Another minister is on staff for full time spiritual care and bereavement ministry.
A small sunny chapel is tucked in the corner of the garden. People can go there to pray, mediate and grieve in front of an altar. A large metal tree of life rests upon it. Rose said that some families choose to have their children’s funerals in the chapel.

It is also possible to have a child waked at the House. A special room is set aside for this purpose. A crib and a bed, both equipped with cooling blankets, make it possible for children to lie in state for three days.

A large garden at George Mark House is a place of comfort and beauty.

Follow-up comfort is important at George Mark House. After a child’s death, staff remains available for phone calls and visits.

Families who have lost a child have the opportunity to memorialize their child’s story through art work. When they are ready, they can come to a tile-making workshop. The finished pieces become part of a tile wall in the garden. This project is coordinated by the Art for Life Foundation, a California-based project which brings art therapy to hospitals and other medical settings.

Sitting in the garden with a visitor, Teri Rose points to one of the tiles. It shows a fluffy redbird poised at the edge of a stream. The mother of a five-month-old baby boy painted it after her child’s death. “During her pregnancy, she kept seeing the same redbird outside her window,” said Rose. “After the baby was born and the family brought him here to die, a redbird began showing up in our garden.”

For information on how to donate to the George Mark House for Children, go to www.georgemark.org, or call (510) 346-4624.

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