Help, Understanding & Group Support HEART TO HEART Volume 3 ♥ Fall 2019 HUGS Helps Parents Have Fun Without Guilt ole Ward likes “being crazy, playing as a MITO cocktail that helps with his healthy and free of germs is a top priority Cwith cars, running around in the overall health, says Trevor. for the family. playground, and jumping off anything In addition, he goes to Kapi`olani With all of these health challenges he can see,” says his dad, Trevor. Cole for quarterly bone marrow biopsies, and after spending so much time in the is a typical, active 3-year-old, but he and Heather communicates with Cole’s hospital during Cole’s first 8 months of has a serious medical disease that can doctor at the Seattle Cancer Care his life, the family has learned to take one limit his energy, especially when he’s Alliance, monitoring for any signs day at a time. Heather says they enjoy sick, dehydrated or fasting. He is usually of leukemia. They worry about Cole the simple things like going to the beach wearing a helmet to protect his brain if he developing leukemia because a child with and being outdoors. After several visits should fall. mitochondrial disease can’t tolerate a to Oahu, Heather and Trevor moved to Cole spent the first 4 months of his bone marrow transplant or chemotherapy. Hawaii from Spokane, Washington in life in the Kapi`olani Medical Center for November 2014, and agree that, “There’s Women and Children’s Neonatal Intensive no better place than Hawaii.” Care Unit (NICU) due to a number of Heather and Trevor are also grateful health issues, including brain bleeds in to HUGS, where they have found support his cerebellum and bone marrow issues. in the connections with other HUGS He was then airlifted to Seattle Children’s families in similar situations through peer Hospital, where he stayed for another 4 events. months for additional testing. His mom, “We look forward to every HUGS Heather, explains that he had very few event, from Family Dinners, Moms’ platelets, only 15,000, when the normal Nights and Dads’ Nights, to Respite,” says range is between 150,000 and 450,000 Heather. “HUGS has really helped to platelets. Cole also had very few red blood lighten our spirits.” cells. “Cole has a twin brother, Charlie, At 1 ½ years old, he was diagnosed so the fact that he can also participate in with mitochondrial disease, a genetic The Ward Family many of the HUGS events is fantastic. disorder that occurs when the Cole and Charlie love the HUGS house, mitochondria fail to produce enough Fortunately, Cole’s platelets have been and we feel comfortable knowing they are energy for cell and organ function. This steadily increasing over the past three safe in the hands of the HUGS staff and can cause serious problems in the brain, years, with counts averaging about 15,000 trained volunteers,” Trevor adds. “When heart, intestines, and muscles, as well during the first year, then increasing to trying to be great parents, it’s hard to do as with body weight, balance and body 30,000 and 60,000. Heather excitedly something fun for yourself without guilt. temperature. While it is often an inherited reports that his most recent complete HUGS makes that possible. Thank you, disease, both Heather and Trevor tested blood count was more than 100,000 HUGS!” negative. for the first time ever. These counts Your support helps the Wards and Cole’s regimen includes speech and his energy go down when he gets other HUGS families connect with each therapy, occupational therapy, physical a cold, which often requires him to be other, providing a sense of normalcy to therapy, and nutritional supplements such hospitalized for a week, so keeping Cole their lives. ALOHA! In our Fall 2019 issue of HEART TO HEART, we featured two longtime sponsors of our HUGS Family Dinners. Event sponsors have an opportunity to be a part Help, Understanding of the event, seeing firsthand how their support is making a difference in the & Group Support lives of our HUGS families with seriously ill children. In this issue, I’m pleased For Hawaii’s Seriously to highlight two dedicated sponsors of two of our most special and memorable Ill Children and Their events for our HUGS families. Families HONORARY TRUSTEES Locations Foundation, the philanthropic arm of Locations Hawaii, June Jones comprises more than 200 Locations Hawaii agents and staff, who Barbara Marumoto-Coons donate more than 2,000 volunteer hours in the community each year. BOARD OF DIRECTORS For 14 years, Locations Foundation has been providing volunteers and sponsoring our annual Calvert Chipchase IV Celebration of Life event. This year, it was no different. Volunteers were raring and ready to help President with set-up, parking, registration, activities, games, serving food, and clean-up. (Read more Anne Lee Past President about Celebration of Life on page 3.) Patrick Klein Vice President Last year, Locations Foundation also selected HUGS for their “30 in 30 for 30” campaign, in Christine Daleiden which they performed 30 random acts of kindness, one each day, to 30 community-based Vice President organizations to celebrate their 30th anniversary. We were thrilled to be chosen for Day 2, Charles Loomis Vice President when the team delivered $1,000 worth of canned goods, cereal and gift cards to help our HUGS Catha Combs families. The Foundation has also been a loyal table sponsor at our HUGS Gala. Secretary JoAnn Lumsden For 16 consecutive years, Brett and Dee Thomas have been sharing Treasurer their love of surfing and the ocean and their aloha for our HUGS kids Christian D. Chambers Lauren Kwon Dawson through Surf4HUGS. The wonderful partnership began as a way for Joel Emperador, Brett and Dee to involve their then teen-age children, Torrey and Leila, RN, MSN, CCRN Elizabeth M. Ignacio, M.D. in giving back to the community. Because surfing was a family activity Julie Hirano Kaneko Erin Kirihara they all loved, they created Surf4HUGS. Each year, the Thomases have Iris Matsumoto rounded up their friends in the surfing community, so our HUGS kids Ben Morgan Terri Okada can experience the joy of riding a wave. For many families, Surf4HUGS Robb Tanaka Bill Tobin is the one event they return to year after year. Frank Tokioka II Theresa van Greunen Kevin Yim With Brett and Dee’s wide network, you never know whom might show up at Surf4HUGS. One year, it was the cast of “Hawaii Five-0” while last year, John John Florence, two-time world title MEDICAL ADVISORS holder of the World Surf League’s championship tour, came to sign surfboards and take photos Desiree Medeiros, M.D. with families. Jimmy Gusukuma, who recently retired from Rainbow Drive-In, was there again Darryl Glaser, M.D. with friends firing up the grill, Ted Coons donated all the beverages and Dive Oahu donated Howard Klemmer, M.D. beach umbrellas for families to stay out of the sun. The Thomases ensured each HUGS child got Joan Naguwa a commemorative Surf4HUGS T-shirt, rash guard and trophy, and as a surprise, local jewelry Executive Director designer Leighton Lam gifted special surfing dolphin necklaces. Dee and Brett recently moved The HEART TO HEART to Haleiwa and organized a Surf4HUGS North Shore event during the summer. (Read more newsletter is published three times a year (Spring, Summer, about Surf4HUGS on page 4.) Fall) by HUGS located at 3636 Kilauea Avenue Honolulu, HI 96816-2318 From the bottom of our hearts, mahalo to Locations Foundation and Brett and Dee Thomas as Tel: (808) 732-4846 Fax: (808) 732-4881 well as all other Family Event sponsors for bringing joy to our HUGS families and making them Email: [email protected] feel so loved. Website: www.HUGShawaii.org Mahalo, Joan Naguwa AUW Designation #96590 Executive Director CFC Designation #84333 2019 Fall Newsletter [ 2 ] ♥ HUGShawaii.org Wet’n’Wild Hawaii Hosts Christmas in July hristmas came early, thanks to the generosity of Wet’n’Wild Hawaii. On July 27, Cthe water adventure park treated our HUGS families to a festive “Christmas in July” celebration. Everyone had a grand time on the rides, and many stayed to watch “Incredibles 2” on the outdoor screen. Of course, Christmas in July wouldn’t be complete without photos with a surfing Santa and Christmas presents for all of the HUGS children. One HUGS Mom said, “My kids enjoyed the Water Park; they had sooo much fun! I finally got some quality time with the kids!” Mahalo to Wet’n’Wild Hawaii for sponsoring Christmas in July, Papa John’s Pizza for donating the delicious pizzas, Pepsi Beverages Company for all the beverages, and to all our volunteer elves for making it a day to remember. Celebration of Life Brings Bereaved Families Together Sunset Ranch Hawaii served as the scenic backdrop for HUGS' annual Celebration of Life on August 25 elebration of Life allowed our HUGS families to enjoy Four Kauai families attended the special event, courtesy Ctheir time together while honoring the lives of their of Saint Michael and All Angels Episcopal Church in children in meaningful activities, that included a memory Lihue. wall, magnet making, and making Morse Code beaded Marilyn Allen, representing the church, said, “Saint bracelets shared by Mrs. Hawaii United States, Sejal Megill. Michael and All Angels Episcopal Church is so grateful to The relaxing day also included a buffet lunch plus cake and support HUGS families from Kauai and enable them to other desserts, refreshing frozen lemonade from Keiki-Ade, experience this moving event.” and lawn games.