THE VIRGINIAN-PILOT
Copyright (c) 1996, Landmark Communications, Inc.
DATE: Sunday, April 7, 1996 TAG: 9604060097
SECTION: SUFFOLK SUN PAGE: 14 EDITION: FINAL
TYPE: Cover Story
SOURCE: BY PHYLLIS SPEIDELL, STAFF WRITER
LENGTH: Long : 124 lines
ASHLEIGH KEES and her brother Isaac were up with the sun. Clutching Easter baskets, the Virginia Beach youngsters bubbled with excitement, eager for a day of Easter eggs, bunnies and fun.
For their mother, Sallie Marie Kees, the excursion to the annual Edmarc Hospice for Children's Easter party promised much more than a good time. It would be a few hours of family fun in which Ashleigh, 4, would fit right in, and in which Kees would find support and understanding from other parents whose children are also fighting life-threatening diseases.
When Ashleigh fell ill just over a year ago with suspected meningitis, recurring symptoms led to more tests and to the discovery of a rare, inoperable brain tumor. ``It was my worst nightmare come true,'' said Kees, herself a cancer patient, choking back tears as she quoted Ashleigh's slim chances for survival.
The Edmarc Easter party, a tradition for the last five years, is among several annual outings through which the Portsmouth-based children's hospice brings together families like the Keeses, who daily confront the complexities and heartbreaks of loving and caring for a severely ill child.
The mood of the party, however, was as bright as the sunshine that had broken though morning clouds. Childish squeals of delight and the whirr of cameras followed the youngsters as they dove into the shrubbery for an Easter egg or reached from a wheelchair into a lowhanging branch for a not-too-well-hidden candy egg.
This year's party was coordinated by the Elizabeth River Service League. It was held at Aldersgate United Methodist Church, in the Western Branch section of Chesapeake.
``It helps us to know that there are other families going through the same thing that we are going through,'' said Dianna Johnson, a Western Branch resident.
Johnson's daughter, Amber, 3, was diagnosed with brain cancer two years ago. ``She was originally given three to six months to live, but, with a lot of prayers, she is defying the odds,'' Johnson said.
The other two Johnson children, Blake, 5 months, and Justin, 9, were enjoying the rare family outing. ``Wherever we all go, just the preparation is a major project,'' said their father, David Johnson.
Julie Sligh, Edmarc's executive director, remembered one couple who told her that their only family outing each year was the Edmarc picnic. ``A lot of times, Mom and Dad don't get to do things together or with the family because they are sharing the caretaking,'' she said.
At the Edmarc gatherings, families can meet other families who are experiencing similar problems - coping with their child's hair loss, bloating, and other side effects of chemotherapy and radiation, and balancing the needs of all their children.
Siblings are very important guests at all Edmarc outings, Sligh stressed. ``This says, `We know that this has been a real hard time for you too, and we want to do something special for you too','' she said.
Something special hopped into the party in the form of a very large, very pink Easter bunny. Sunbeam, a professional clown/magician wearing an Engergizer Bunny- influenced rabbit suit, soon captivated most of the youngsters with her magic tricks and balloon animals.
Jarvis Thomas, however, was not impressed. A 5-year-old from Carrollton, he watched the bunny skeptically. ``That is pink and too big because Easter bunnies are white and this big,'' Jarvis said, holding his hands just a few inches apart.
Jarvis, born with severe heart and kidney problems, has responded so well to treatment that his need for Edmarc's help has lessened. But he and his mother, Angela, still appreciate the supportive camaraderie of the outings.
The Guthries, a young Navy family from Virginia Beach, brought their daughter Ashley, who is 17 months old and has kidney cancer. Thanks to Edmarc, the Guthries have been able to have Ashley home with them and her twin, Blake, for five intermittent weeks since her diagnosis last October.
``We came today to get out of the house and to see everyone we know from the hospital,'' Brandy Guthrie said. One of those friends is Wendy Debman who lives in the Woodlake section of Suffolk with her husband and daughter Lindsay. Lindsay, 3, has nine more months of chemotherapy scheduled for treatment of a brain tumor, but the good news is that the most recent scan showed no cancer.
``It is good for Lindsay to be around friends and to understand that not all kids have cancer,'' Debman said. ``She needs to know that different kids have different problems.''
Across the room, Brian Clark was holding two bright-pink balloon animals for his daughters Ashley, 2, and Amber, 4. Clark's son, Alex, was an Edmarc client for all 21 days of his brief life. Born with Trisomy 13, a chromosonal disorder, Alex suffered multiple physical disabilities but was able to spend time at home with Edmarc's help.
Through the hospice, the Clarks learned to care for Alex and were able to have him at home when he died. Since Alex's death a year ago, Edmarc has offered continuing support to the family, including guidance in explaining his life and death to Amber and Ashley.
``You can talk about it and you can say you understand, but until it actually happens you don't understand,'' Clark said.
Lorraine Samuel understands. She also believes that the caring support of other families can offer hope and a renewal of spirit to an anguished parent.
She lost her 4-year-old son, Craig Jr., to an inoperable brain tumor last fall. ``I knew from day one that Craig was terminal,'' she said. ``I come back now because I meet other parents who are going through what I went through.''
She said, ``I saw another child with a brain tumor, and at first so many memories came back that I wanted to cry. But I said, `No, I will talk with her parents instead, and maybe that will help them and also help me to fill up that hole in my heart.' '' ILLUSTRATION: [Cover, Color photo]
A DAY OF SHARING
Photo by GARY C. KNAPP
Lindsay Debman, 3, rests after participating in an Easter egg hunt
at the Edmarc hospice center. Lindsay is undergoing treatment for a
brain tumor.
Photos by GARY KNAPP
Sallie Marie Kees and her daughter Ashleigh show off their bounty
after finishing the egg hunt.
From left, Meredith Louk, an Edmarc nurse, and her son Blake visit
with one of Louk's patients, Ashley Guthrie of Virginia Beach.
Five-year-old Jarvis Thomas from Carrollton hams it up with
balloons. Jarvis is responding well to treatment for heart and
kidney problems.
by CNB