http://pleasantonweekly.com/print/story/print/2013/04/19/a-home-forever


Pleasanton Weekly

Cover Story - April 19, 2013

A home forever

Families make the most of their children's limited life spans, at George Mark Children's House

by Cathy Jetter

George Mark Children's House is a pediatric palliative care facility tucked away in the hills of San Leandro. Though the 5-acre setting is peaceful and perfect for the dozens of families who are served by the welcoming atmosphere and caring staff every day of the year, it is a shame that the bucolic setting allows the rest of the world to remain largely unaware of this incredible home hidden a mere mile from the 580 freeway.

No one wants to think about sick children with limited life spans, but it only takes one visit to understand that while death and the process of grieving is recognized and addressed as part of the unavoidable reality for those who need their services, the people at George Mark are all about the business of living, sharing and making the most of the time given on this earth.

Time was a driving force behind the creation of George Mark Children's House. As a pediatric oncologist with Children's Hospital Oakland, Dr. Barbara Beach saw too many children spending too much time in the hospital environment.

While adults with terminal illnesses are expected to and usually live for a limited period of time during which there is accepted protocol, including hospice, children with life altering illnesses can spend many years receiving treatment. Beach explains that while children coping with what the medical community terms "chronic progressive life limiting illnesses" can live for two decades or longer, they require daily specific medical interventions to make that happen.

"Their lives are cumbersome," says Beach. "Every member of the family is affected by the child's illness 24 hours a day, seven days a week, when parents become full time caregivers."

In her practice, Beach saw firsthand the toll taken on families as they dealt with the need for constant vigilance.

"These kids grow up, but they can never achieve an independent life," she says. "Periodically the kids need a break from their parents and parents need a break from their kids. It helps if they can take a break from being in charge of medical care and have the opportunity to just be a normal family."

Normal is a luxury for families of children with life altering illnesses. From the moment of diagnosis the roles are changed, the settings altered. Children become patients; parents become caregivers, researchers, advocates, insurance negotiators and trained medical specialists. Hospital beds, oxygen tanks, monitors and refrigerators stocked with life-saving medicines transform homes into mini-ICU's operating full time under the watchful and worried eyes of mom and dad. Additionally, changes in treatment can mean long hospital stays as parents learn to use new equipment or watch for complications.

Beach decided there must be a better way, a place where families could let others take over the medical care, or learn new procedures without the restrictions, rules and sterile atmosphere of a traditional hospital. In the mid 1990s Beach and clinical psychologist Dr. Kathy Hull set out to find it. The home was named for Hull's two brothers, George and Mark, who died at the ages of 30 and 16.

"Unfortunately, it didn't take long to discover there was no model for what we envisioned in the United States," Beach says. "We had to make several trips to England to learn how it was done."

Using the motto to "steal shamelessly and share seamlessly," Beach and Hull designed George Mark using the best of what worked at each facility they visited, and as a result George Mark has since become the destination for those hoping to establish similar facilities in other areas of the United States.

George Mark offers different programs for families in different stages of dealing with their child's illness. Transitional care is for families leaving the hospital and taking on the medical care of their child. Respite care provides periodic breaks from the responsibility of caring for a child with a life threatening illness. Families generally receive 21 days of respite per year, with parents offered the opportunity to rest in the house while their child is cared for or to take a vacation knowing their child is well loved and attended by trained staff.

End-of-life care gives families the opportunity to make the most of their last moments with their child, with support services provided to the extent each family chooses. However, Beach is quick to point out that George Mark involvement does not end with a child's death.

"We provide bereavement support forever," she explains. "We understand that grief is different when a child dies, and may be needed long after the traditional year that is offered by hospice."

Beach adds that immediately after the child dies, parents are often too overwhelmed by emotion, and the desire to visit George Mark may take a year or two. But once a child has stayed with George Mark, they are considered family members, and bereavement services are offered for a lifetime.

"This is not a sad place," Beach assures. "For families, for siblings, this is a tangible place full of memories. This all becomes a part of the fabric of their lives."

It is difficult to describe George Mark Children's House to someone who has not been fortunate enough to take a tour and see the facility in action. Even using the term "facility" feels uncomfortable; the sterile and depressing image that word conjures is a stark contrast to the nurturing atmosphere found within the 11,000-square-foot home where hardwood floors allow wheelchairs to move about unimpeded and every door is wide enough to accommodate a bed-bound patient who would like to enjoy the garden on a sunny day.

No one wears scrubs. Oxygen tanks and other equipment are tucked away behind sliding doors when not in use. Craft rooms are filled with art supplies, a hydrotherapy tub is always warm, and the game room is a favorite destination for healthy siblings who can play ping pong, watch television or play video games with whomever might be hanging around.

There are no set visiting hours, no age restrictions and the entire family is encouraged to be together, whenever they can, during a family's stay and especially throughout the end of life process.

Though palliative care can be part of a treatment plan at some hospitals, standalone facilities like George Mark are still rare.

"I thought if we built it, they would come," Beach recalls. "But I think we were ahead of our time. It has been a struggle educating the medical community and the community at large."

That includes the insurance industry, which has been slow to comprehend the cost benefit offered by places like George Mark, where there is no need for full time doctors or expensive medical equipment on site. Ken Sommer, director of Advancement at George Mark, points out that even though analysis shows services offered at George Mark cost nearly 60% less than at a hospital, insurance companies have been slow to accept this philosophy, hindering financial security and requiring valuable hours and resources to be dedicated to raising funds and public awareness.

"Sixty percent of our income comes from the community and private donations," explains Sommer. "Only 40% is earned income -- payment from insurance companies for services they recognize."

Given that no George Mark family is ever sent a bill, advocating for a greater partnership with the insurance companies is imperative.

Claire Goveia first learned about the George Mark Children's House during her sophomore year when she toured the house as a committee member for Mr. Amador, an annual male pageant event the students of Amador Valley High School run to raise money for a chosen charity. Previously, larger, more nationally focused organizations had been the beneficiaries of the friendly competition in which 10 young Amador men present their talents to the student body and parents who then vote for their favorite contestant.

Now a senior and president of her class, Claire believes the shift to a local charity has made the event more meaningful for the participants.

"Being a part of Mr. Amador is a lot of work," she says. "We put on events to raise funds throughout the year, and the show itself takes a big commitment. The fact that we take the boys to the house and let them see where that money goes gives them a connection that makes the work so much more worthwhile."

Claire's connection with George Mark was strong enough to inspire her to add volunteering to her already ambitious schedule, though her parents had reservations when she announced she wanted to spend time interacting with the children.

"I was 15 and I was squeamish about pulling out one of my own teeth," Claire recalls. "My parents were understandably concerned for me to be in such a serious environment, but after my first visit I couldn't stop talking about all the kids and families I met there. Once my mom and dad visited and took a tour, they understood how amazing it is to be a part of it all."

Claire acknowledges the grave nature of the children's conditions, but says that is not the focus once you are involved.

"It would be easy to think that a place like George Mark is depressing, but it's not," Claire explains. "Of course, it's intense sometimes, and at first it is an emotional struggle. You want those kids to feel like they are just like everyone else, but you have to respect their limitations and focus on what they are capable of doing, not what they can't do."

Claire has been amazed by the community aspect of George Mark, apparent in the way kids with more mobility help the kids who can't do as much.

"You know they are dying, but inside that house it just feels like a home, and a community that has accepted that reality and is ready to make the most of the time they have left," she notes. "After a while it doesn't even feel like volunteer work, it feels like you are hanging out and when you're not there, you just want to go back."

Becky Randall agrees. In 2011 Becky began driving from her Pleasanton home with her maltese, Cody, to volunteer in the pet therapy program at George Mark. It was not a good fit for Cody, but Becky couldn't stay away.

"The standard volunteer commitment is one four-hour shift, one day each week," she says. "I thought if I was going to be there four hours, I might as well be there all day."

After training to work with the kids and families, Becky found herself spending the hours following her volunteer shift working in the office, helping to organize, schedule and complete projects that needed the skills she had developed working with nonprofit groups in the years since her children had grown.

"And then one day the position of manager of Volunteer Services opened up and they asked me if I would like to apply for the job," she remembers.

Now a full time George Mark employee, Becky says kids spot her in the hallways and begin their pleas for a play date.

"They remember me as a volunteer, when my only job was to hang out and enjoy interacting with all these amazing kids," she says. "Now I have to convince them to let me get a little work done before we sit down together. But really? Spending time with those kids is the best part of my job."

How you can support George Mark Children's House

* DONATE -- Established in 2004, George Mark Children's House was forced to close its doors for six months in 2010 in order to reorganize and formulate a new business plan. Because insurance companies do not yet recognize a majority of services offered by George Mark, the facility is largely dependent on the generosity of private donors.

* ATTEND THE GALA -- George Mark Children's House's major fundraiser, The Autumn Gala, will be held at George Mark on Sept. 21.

* VOLUNTEER -- There are many opportunities to become involved with the wonderful works going on at George Mark. Working with the families and kids requires participation in a weekend training program and a year-long commitment to working one four-hour shift per week. Volunteers are always needed to help with gardening, fundraising, pet therapy, office work and a wide variety of other activities.

* PURCHASE AN ITEM FROM THE WISH LIST -- George Mark has an ever changing variety of needs to help them best serve the children and their families. The Wish List can be found at www.georgemark.org.

Amador fundraisers

Help Amador Valley High School support George Mark Children's House by attending a Mr. Amador fundraising event: Let the Mr. Amador nominees clean your car tomorrow, from 9 a.m. until all the cars in line have been cleaned. Location: Big O Tires, 3688 Washington St.

Help your favorite Mr. Amador nominee win the title by buying a ticket to one of the two performances on Monday, April 22. Tickets can be purchased at the high school in advance, and will also be available at the door before show time. Come to the 5 p.m. show for the bargain price of $10 per ticket, or catch the always sold-out 8 p.m. performance for $15.

Amador donations to the George Mark Children's House

2011 -- $7,000

2012 -- $10,00

2013 -- Hoping for $12,000

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