Join the Fun
The 4th annual Mattie Miracle Walk and Family Festival will take place this Sunday, May 19, from 11 a.m. - 3 p.m. at St. Stephen's & St. Agnes Upper School Campus, 1000 St. Stephen's Road, Alexandria. Information on the event, pictures of the gift baskets to be raffled off, photos of previous years' events, and more is available on the website, www.mattiemiracle..., where pre-registration is also available and raffle tickets can be purchased. Registration will also be available on the morning of the walk at the St. Stephen's & St. Agnes Upper School campus. Anyone interested in volunteering for the event can contact Vicki Sardi-Brown, co-founder, chair and president of Mattie Miracle Cancer Foundation, via email (vicki@mattiemirac...) or by phone (202-549-8036).
When Vicki Sardi-Brown sees a butterfly, she knows her son is near.
Mattie, her 7-year-old son with husband Peter Brown, bravely faced an uphill battle with multifocal osteosarcoma, a rare and aggressive type of bone cancer, for 14 months, much of that time spent at Georgetown University Hospital. His rooms were filled with bins of craft supplies and toys, his walls were decorated in bright colors, his parents never left his side and his nurses quickly fell in love with the warm brown eyes and bright, wide grin.
While Mattie was still undergoing treatment, his parents, their friends and his Team Mattie supporters gathered for the first of what would become the Mattie Miracle Walk at St. Stephen's & St. Agnes School, in Alexandria, to show Mattie how much he was loved and thought of. The walk continues, with proceeds from registration and raffle tickets going to a variety of programs, including the funding of a snack cart at Georgetown hospital for other families enduring cancer treatment, the funding of a "child life" specialist for those same families, and a monthly luncheon for nurses in the hospital to share their stories in a comforting and supportive environment.
"Mattie was a character," Sardi-Brown said. "No matter how much education I had, he always threw me for a loop."
The photos she's posted on her blog, http://mattiebear.blogspot.com, which she started on the day of Mattie's diagnosis and continues to update daily, show a little boy who loved nature and was inquisitive from an early age.
"At the age of 2, he'd walk into the kitchen, open the drawers and help himself to screwdrivers and pliers," which he'd then use to take apart and reassemble his toys, an early indication of the engineering interest he shared with his father, she said.
WHILE HE WAS HOSPITALIZED, Mattie also created a whole series of shapes and buildings out of cardboard boxes, collected for him by nurses and others at Georgetown, and loved playing with Legos every chance he could.
And he was loyal, Sardi-Brown said. "When he was in preschool, he had a close group of a few friends," much in the same way that people retain a handful of good friends as they grow up, she said. "In some ways, he was an old soul. He reacted to people in a mature way. Those kids still come to the walk."
Ann Henshaw, a friend of the Browns' since her daughter went to preschool with Mattie at St. Stephen's, has become one of the longtime volunteers and coordinators of the walk and other events. Her husband is an orthopedic oncologist and was able to talk with the family about his diagnosis from an early stage, which provided the family with some comfort.
She immediately set up Mattie's Helpers and went about working to ensure that the Brown's house was taken care of while they were in the hospital, that the cat was fed and the plants watered, and that anything Mattie wanted was provided.
"He wanted to ride a bike, but he didn't know how," she recalled. Within a few hours, a bike and up to a dozen sets of training wheels were collected at her house. Another time, they rounded up Scooby-Doo videos, because he wanted to watch some cartoons.
"If you give a mom a tangible 'to-do,' they're there," she said.
Another time, they arranged for a visit from the Reptiles Alive! company, and Mattie took special delight in making sure Henshaw came in contact with creepy crawlies she despised.
Henshaw remembered the first walk as a bright, sunny day, and Mattie was very excited to be out of the hospital and surrounded by people who loved him. "He had a ball."
Lately, she's been collecting items for the dozen or so baskets to be raffled off during this year's walk, picking up odds and ends and going to stores with Sardi-Brown to find last minute things to make the baskets colorful and fun. Each item has a butterfly on the outside, which Sardi-Brown writes on her blog has become a symbol of her son's presence with her.
The Browns have decided to take the lessons they learned during Mattie's hospitalization to improve the stay for other families in similar situations.
With the money they've raised from the walk and other donations, the Browns have helped pay for an additional child life specialist at Georgetown.
"We help families cope with their hospitalization and help kids understand why they are in the hospital," said Linda Kim, the child life coordinator and a certified child life specialist at Georgetown who has known the Brown family since Mattie got sick. "We teach kids and parents coping skills and use distraction during procedures or other painful things. We also plan milestone celebrations and events for hospitalized kids and pretty much support anything fun for patients."
CHILDREN DON’T JUST NEED medical treatment when they're in the hospital, but their emotional, psychological and social needs have to be tended too as well, and it's an area that's under-appreciated in many cases, Sardi-Brown said. Prior to help from the Mattie Miracle Cancer Foundation, children were only visited for up to 15 minutes per day, but the foundation's help has allowed the hospital to hire a second specialist.
The specialist "specifically works with oncology patients and with patients who are being sedated for procedures like MRI, CT scans and many others," Kim said. "We wouldn't have been able to expand our services without their generous donation," and the procedural sedation team at the hospital also has access to the specialist and are working with her to conduct a study measuring the impact child life specialists have on certain procedures.
The Mattie Miracle Cancer Foundation also has contributed to symposia, one in Washington, D.C. and another in California, working toward the creation of national standards of psychosocial care for pediatric cancer patients. "There are standards of care for biological and medical treatment, but no standard treatment for social and psychological support," Sardi-Brown said. Some members of Congress have signed on to support the creation of national standards, and the foundation continues to strive toward this goal.
Additionally, the Mattie Miracle Cancer Foundation funds — and stocks — a snack cart that makes the rounds in the hospital three times per week, filled with goodies including candy bars, bottles of drinks and other snacks for patients and their families. Last Halloween, the foundation collected and donated 1,000 pounds of candy to the cart.
The idea for the cart blossomed out of the routine supply of food provided to the Browns during Mattie's treatment, said Tricia Grusholt, a pediatric oncology nurse at Georgetown who was with the Browns from the time Mattie arrived at the hospital until his death.
Grusholt, a nurse for more than 20 years, has become close with the Browns and has attended every one of the Mattie Miracle walks, with her own children, who think of Mattie, and his parents, as family.
The Browns were with Mattie continually, and their family and friends quickly worked out a schedule to provide them with breakfast, lunch and dinner every single day, something Grusholt said she'd never seen before.
The snack cart brightens people's days, she said.
THE NURSES COULDN’T HELP but love Mattie while he was in for treatment, but it's hard for them to separate their hearts from their patients. It's a line that the Brown family crossed early, she said. Sardi-Brown understood this, and the foundation now helps fund a lunch each month to provide nurses with a place to share stories, express their frustration or just get a shoulder to lean on during tough times.
Recently, the nurses used the luncheon to remember a woman who worked at the hospital who had lost her own battle with cancer. Nurses spend their careers taking care of others, but sometimes they need to be taken care of as well, Sardi-Brown said.
Grusholt doesn't shy away from heaping praise and gratitude on the Brown family, repeatedly referring to Sardi-Brown as "amazing," "selfless" and "awesome," and to Peter Brown as "wonderful."
Mattie sometimes was able to go home for a week or so, but when he had to return, his dad happily brought a cart filled with bins overflowing with arts and craft supplies, Legos and decorations for his room, to make Mattie's stay as easy as possible, she said. Together, Mattie and his dad built "every Lego set out there," enjoying their shared love of building things, Grusholt said.
There's a tremendous respect and admiration for Sardi-Brown from her friends and those who know her through the foundation.
"She's an inspiration to me," Grusholt said. "The strength and courage she gave that little boy was incredible at a time when she was frightened out of her mind .... It's her love for Mattie that propels her."
"It means so much, because they simply don't have to do any of the wonderful things they are doing," added Kim. "They lost a child at Georgetown and it must be so painful to step into the building for a meeting or to bring a donation, but they do in so many ways. It's nice for families to know they are receiving a lot of support from parents who know what they are currently going through."