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 , Heather and Trevor moved to Cole spent the first 4 months of his bone marrow transplant or chemotherapy. 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 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 ’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 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. We extend our deepest gratitude to our sponsors, As a highlight, families took the short hike to the grove Locations Foundation, Sunset Ranch Hawaii, Accel of koa trees that is dedicated to our HUGS children who Rentals, Mali Bella Foundation, Keiki-Ade, Jeraldine have passed away. This year, 14 families participated in Labrador, and A Catered Experience. planting koa saplings in memory of their child.

2019 Fall Newsletter [ 3 ] ♥ HUGShawaii.org Surf4HUGS Continues for 16th Straight Year

surfer said, “When the surf’s up, your life is too.” home with a Surf4HUGS T-shirt, rash guard, trophy, towel, A Life felt good for our HUGS kids at the 16th Annual and a beautiful souvenir necklace. Surf4HUGS, thanks to the Thomas family and help from the We extend our sincere thanks to Brett and Dee surfing community. HUGS families gathered at Kuhio Beach Thomas, Jimmy Gusukuma and friends, Ted Coons, Dive on Sunday, Oct. 20, for a carefree day of sun, sand and surf. Oahu, Sobel Westex, Leighton Lam, all the volunteer surf “The event has really grown over the years, with more instructors, as well as volunteers from Banana Republic, than 200 children, families and volunteers participating, and the Sergeant Audie Murphy Association (SAMA), Junior everyone having fun out in the water,” said Dee Thomas. “It Enlisted Council (JEC) Better Opportunity for Single feels good to see the kids smiling and having a great time, Soldiers (BOSS) and several University of Hawaii football even the little ones on the beach,” added Brett Thomas. players. And special mahalo to KITV, KHON2 and Hawaii Families enjoyed the ono lunch, and each child went News Now for covering Surf4HUGS!

Big Island Families Have Fun at the Zoo HUGS Families Connect on Kauai

Over on the Garden Island, five HUGS families were treated to a scenic train ride aboard the Kauai Plantation Railway, followed by a picnic lunch with games and HUGS Families on the Big Island enjoyed a relaxing day prizes. The gathering allowed families to connect with at the Panaewa Rainforest Zoo in Hilo, that included a each other and was made possible by Saint Michael and delicious lunch and fun games and activities, thanks to All Angels Episcopal Church, which started a HUGS sponsor Clinical Labs of Hawaii. ministry on Kauai.

2019 Fall Newsletter [ 4 ] ♥ HUGShawaii.org Bringing Joy to HUGS Kids When They’re in the Hospital

t’s often lonely for a child to the hospital and be there for my Ispend weeks or even months other children at the same time. at a time in the hospital, I am just so thankful to have away from family members the HUGS staff and volunteers and friends. HUGS’ Hospital spending time with him and Visitation program helps to cheering him up, also making my relieve the stress and anxiety of other children feel special and parents during hospital stays cared for.” and brings joy and smiles to Through our Hospital HUGS children through toys, Visitation program, HUGS also interactive games and playful Ronan with Mom offers amenity kits with basic engagement. hygiene items to HUGS families as well as a one-time Twice a week, a HUGS Family Services Program stipend through Sammy’s Keiki Aloha Fund that helps Specialist visits children at Kapi`olani Medical Center neighbor island families with hospitalization-related for Women & Children, and once a week at Kaiser living expenses. Neighbor island children in need of Permanente Moanalua Medical Center and Tripler emergency medical treatment are often medivacked to Army Medical Center. Small toys and bedside play are Honolulu hospitals, and with no time to pack, a parent offered to lessen a child’s anxiety and fear associated often accompanies the child with just the clothes on with hospitalization and help him or her cope with their back. stressful medical procedures. Interns from the Hospital Visitation is the foundation of all HUGS University of Hawaii John A. Burns School of Medicine programs with 98% of HUGS’ referrals coming from also visit HUGS children at Kapi`olani Medical Center hospitals. HUGS meets families and their children on a weekly basis. On Wednesday afternoons, siblings who are referred by a nurse, social worker or child of hospitalized children are invited to Kapi`olani’s life specialist to address their emotional and financial Playroom to play with video games, board games and needs as they begin their long and challenging journey toys during SibTime, a collaboration between HUGS of childhood illness. Families learn about other HUGS and Kapi`olani Medical Center. programs and services, explore community resources One HUGS mom said, “My son has been in the through our Ho`okele case management program, and hospital for more than four and a half months. As a gain immediate support from Sammy’s Keiki Aloha single parent, it’s hard for me to be with my son in Fund for neighbor island families.

To date, HUGS has made more than 300 visits to hospitalized children this year.

Aloha for Hawaii Charities Make a donation to HUGS through friendsofHawaii.org between Nov. 15, 2019 and Jan. 15, 2020, and your gift will go further, triggering a bonus boost from funds raised at the 2020 Sony Open by Friends of Hawaii Charities.

2019 Fall Newsletter [ 5 ] ♥ HUGShawaii.org PHOTO GALLERY Help, Understanding & Group Support

Hawaii Lodging & Tourism Association Presents $7,500 to HUGS Mufi Hannemann, President and CEO of the Hawaii Lodging & Tourism NAIOP Hawaii Annual Charity Golf Tournament Association, presented a symbolic check for $7,500 at our September 21 HUGS On Friday, September 13, NAIOP Hawaii held its annual charity golf tournament Family Dinner, sponsored by Xerox Hawaii. The check was in recognition of at the Kapolei Golf Club. It was a lucky day for HUGS as the beneficiary for HUGS’ participation and fundraising efforts in the 2019 Visitor Industry Charity the 17th consecutive year of this tournament that’s filled with fun, food and Walk with an impressive 90-plus walkers. refreshing libations.

First Hawaiian Bank Community Care First Hawaiian Bank truly cares about our HUGS families. Employee Kahala Business Association at HUGS volunteers gathered at the Main Branch on July 27, filling backpacks with On August 10, members of the Kahala Business Association showed their school supplies to help our HUGS kids get ready to go back-to-school, as well neighborly support at our HUGS house. They spent the morning cleaning our as assembling reusable bags filled with canned goods and other staples and sandbox, beautifying our memory garden, washing down the benches, and weed making greeting cards for the benefit of our families. whacking, among other tasks.

C.S Wo & Sons Canned Food Drive Impact Fellowship Church Five HomeWorld and Ashley Furniture stores hosted a private sale on August Members from Impact Fellowship Church also lent a hand with their time and 17, asking their customers to donate canned goods and other non-perishable skills at the HUGS house. They sanitized our sand box, repaired the storage closet items for HUGS. Photo from HomeWorld Kapolei. and steps, refurbished the picnic benches, and beautified the grounds of HUGS.

2019 Fall Newsletter [ 6 ] ♥ HUGShawaii.org University of Hawaii-Manoa RAs Twenty-eight energetic and hardworking University of Hawaii-Manoa RAs (resident advisors) spent an August morning at HUGS, beautifying the landscape, making greeting cards and helping with Celebration of Life preparations.

HUGS Young Professionals Interested emerging young leaders joined us at our HUGS Young Professionals (HYP) networking event at Haus Supper Club on October 2. HYP is new program designed to engage young professionals in making an impact on Hawaii’s seriously ill children and their families through fundraising and volunteering while having fun.

For more information, call 380-6924.

Ewa Makai Middle School Sixth grade students in Jocelyn Pajimula’s Health & Wellness class at Ewa Makai Middle School completed a unit of study on kindness, empathy and compassion by making greeting cards for HUGS, which will be shared with our HUGS families.

Workplace Giving Designate HUGS as your nonprofit of choice through your employee giving campaign

Team HoloKai 5K Run Special thanks to Team HoloKai, a group of energetic high school students who are committed to making a difference in our community. They selected HUGS as the beneficiary of their HoloKai 5K Run on August 11 at Magic Island. And mahalo to all the parents, supporters, runners, and walkers who braved the early #96590 #84333 morning heat.

2019 Fall Newsletter [ 7 ] ♥ HUGShawaii.org NonProfit Organization U.S. Postage PAID Honolulu, HI Help, Understanding & Group Support Permit No. 9613

3636 Kilauea Avenue • Honolulu, HI 96816

#Hugs4HUGS Nov. 4, 2019 - Dec. 9, 2019

#Hugs4HUGS is a grass roots campaign aimed at raising awareness about HUGS, while raising funds for Hawaii’s seriously ill children and their families. The goal of this year’s campaign, which runs from November 4 through December 9, is $12,000. During this campaign period, organizations, schools and individuals are invited to join #Hugs4HUGS with their own fundraiser. It could be a bake sale, bento sale, hug-a-thon, giving up coffee or your favorite snack and donating what you would have spent to Hugs4HUGS, or “Take 5 to Give $5 and Get 5” by taking 5 minutes to make a $5 donation on Facebook and inviting 5 friends to do the same.

Please also visit and support our #Hugs4HUGS partners:

Teapresso is donating $1 for every special HUGS Iced Tea purchased and also matching donations from Nov. 1 to Dec. 31 at 10 locations: Downtown, Kaimuki, Keeaumoku, Butterfly Ice Cream at SALT is donating From Dec. 2-7, Watanabe Floral is Piikoi, Waipahu, Century Center, Pearl 50¢ from two flavors of its luscious donating 25% from five selected Christmas Highlands, Hawaii Kai, Kapolei, and Hilo. handmade ice cream, from Dec. 1-15. arrangements to HUGS.

For more information about Hugs4HUGS, contact [email protected]

2019 Fall Newsletter [ 8 ] ♥ HUGShawaii.org