Spring 2014A Publication of Coastal Kids Home Care

Brianna desperately needed a life-saving heart transplant.

With her strong spirit, Brianna seemed like any other little girl; but born with an irreparable heart defect, Brianna was in a constant state of wondering and waiting…knowing one day, her heart would give out. By the time she entered kindergarten her health had grown fragile. “It was hard for her,” says her mother, Guadalupe Meza of Soledad. “Even a half day of school, with an aide to make sure she didn’t overexert herself, was too much. At home, I tried to get Brianna to play quietly or watch TV, but she wanted to be out running around.”

Caring for Brianna, and her severely disabled younger brother Alexis, was challenging for her parents. Their fieldwork income made it hard to make ends meet, let alone meet medical co-pays and transportation costs to Lucile Packard Children’s Hospital for Brianna’s treatment. That’s where Coastal Kids made a difference: providing support services that took pressure off the family, along with skilled home nursing care and therapies that allow chronically ill children like Brianna to stay out of the hospital, live life to the fullest…and dream big.

“Brianna can be shy,” says Coastal Kids’ social worker Ruth Emerson. “She still speaks to me through her mother. But when I asked what she wanted most after her transplant, she was direct. ‘When I get my new heart,’ she said, ‘I want to play soccer.’”

A successful pediatric heart transplant is no small miracle. Any procedure comes with risks. After surgery, the child can develop a life-threatening infection, long-term complications, or reject the heart. The donor organ must be the perfect match, taking into account blood type, body size, and severity of the patient’s condition. Since a heart only survives outside the body for four to six hours, timing is everything. Brianna’s new heart at last arrived in September 2013; and against all odds, the procedure was a success. In less than three months, Brianna was home and ready to join her brother on the field.

“Brianna is recovering so well,” says Guadalupe. “Now she’s a normal person like you and me, who can do anything she wants to.” For Brianna Velasquez, approaching her seventh birthday, her normal is going to school like other kids, playing soccer with Lucio, and maybe even trying out for a team next season.

BriAnnA’s GreAt HeArt

Brianna Velasquez loves the color pink, her mom’s cooking, bike rides, and her big brother Lucio. Most of all, she loves soccer, and wants to play on a team, just like Lucio and her dad. For that dream to come true,

Coastal Kids is a compassionate and steadfast lifeline in a sea of uncertainty.

Counting our numbers read how our work impacted the community in 2013

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get to know our kids Courageous, wonderful children living life to the fullest.

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A perfeCt union Learn about our partnership with Lucile packard Children’s Hospital

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stories in tHe mAking Join the fun. read about our upcoming events.

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ph: 1.800.214 (KIDZ) 5439www.coastalkidshomecare.org

Our MissionCoastal Kids Home Care

works to improve the quality of life for children healing from injury or short-term illness, living with chronic serious conditions, or those facing the end of life.

Our professional staff is dedicated to the provision of in-home pediatric medical care, therapies to ensure comfort, and social services to assist the entire family. Services are available to any medically fragile child living in Monterey, San Benito, Santa Cruz, and Santa Clara Counties.

Meet our 2014 Board of Directors

If you are like me, you listened to more than a few corny Knock-Knock jokes while your kids were growing up. But these days, when I think Knock, Knock, I think of Coastal Kids’ amazing nurses and therapists who have been knocking on the doors of families with sick children for the last eight years. How many knocks is that? More than 31,000 and counting!

We knock, and families receive the best medical care we can provide…right in their home. I feel so blessed and honored to do this work. At times, it hasn’t been easy given

our astounding growth. In 2005, we cared for 164 children and in this last year alone…611. Our patients’ diagnoses ran the gamut: babies with congenital problems, kids with injuries or developmental problems, children living with cancers and other serious illnesses, and others with chronic ailments like cystic fibrosis. Our agency embraced all of these children and their families, budding from a fledgling nonprofit to a million dollar organization.

Coastal Kids’ growth would not have been possible without the extraordinary people who support our mission. I thank our incredible Board of Directors for their ongoing leadership, our hospital and community partners for their collaborative spirit, and my dedicated staff who are on the frontlines, administering daily to the babies and young people in our community. Lastly, I offer my heartfelt appreciation to our generous contributors and foundation partners who make our work possible.

I hope you enjoy our first edition of Storybook as much as I’ve enjoyed putting it together. Knock-Knock. It’s Coastal Kids!

Margy Mayfield, RN, BSN

Counting Our NumbersAll of the children we serve are precious! We don’t think of them as numbers any more than their parents do. But our impact in the community is important. Please take note of our 2013 outcomes:

611 children received 5,893 professional home visits from Coastal Kids “Clinic on Wheels” during the year. 4,338 of these visits provided expert home nursing; 1,100 massage, music, and/or art therapy for terminal children; 275 emotional support to children, and care coordination and social service support for parents and siblings. Coastal Kids also completed 204 one-on-one grief support appointments for the parents and siblings of dying children. 18 children received compassionate end-of-life care throughout their last months, weeks, and hours of life.

Knock-Knock!Letter from the Executive Director

LEWIS CANTOR, MD

President

TOM BRyAN

Treasurer

GRACE FELDEISEN

Secretary

KIM CROOK

ELIzABETH

ELDREDGE-PAuL

JuLIE FLANDERS

PAuLA KuNTz

PATTy MITCHELL

SyLVIA PRADER

DIANE ROLLER

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Every day, children from all over the world are admitted to Lucile Packard Children’s Hospital at Stanford. Some arrive by ambulance, others airlifted, and some amble out of cars, vans or buses. They all have one thing in common. They’ve come to be treated by the best. In fact, the name Lucile Packard is synonymous with excellence in children’s healthcare worldwide.

Kids come, afflicted with cancer, suffering from organ failure, in the clutches of chronic, debilitating illness. They come to be diagnosed and treated by experts. They come, so they can eventually go home and convalesce in the comfort of a known environment, surrounded by the warmth and love of their family and friends.

The team at Packard makes this possible for Central Coast children. “We discharge children directly to Coastal Kids. They are like an extension of the LPCH team. They are always willing to take our patients and are flexible and communicative,” says Pat Glusco, a Packard oncology resource nurse. “Without their help, I’m not sure how we would manage these patients.”

Coastal Kids is a lone ranger on the Central Coast. As the sole provider of pediatric home care services in the region, the agency’s staff is on the line to Packard multiple times, every day. It’s a dynamic relationship built to serve the kids and their families. “Families are really grateful to the Coastal Kids’ team. They like and trust the nurses; children don’t need to go to a lab to get their blood drawn, and they usually have the same nurse for continuity of care,” said Glusco. “They have a nurse that can do a face-to-face assessment once or twice a week. Parents can go to work and the child to school because Coastal Kids works with their schedule to make the care convenient for the family.”

“It’s nice to have other eyes out there,” added Debbie Oswald, a coordinator for Packard’s pediatric oncology unit. “Children develop new symptoms all the time. Delaying treatment can change the course of an illness.”

Sadly, children seen by Packard physicians are the most seriously ill kids around. And even with all the advances in modern medicine, some children simply run out of treatment options. When this happens, LPCH will refer them to hospice if that is an available service in their community.

In Santa Cruz, Monterey, and San Benito Counties, Coastal Kids receives all the referrals for terminal children. “Coastal Kids is doing the best job they can with end-of-life care without being a full-blown hospice,” said Oswald. “They are available 24 hours a day, and do everything they can for the families.”

Coastal Kids’ field nurses take snapshots of smiling babies, little kids running and playing, and text them back to their counterparts at LPCH. Packard nurses are thrilled. “It’s the first time we see these kids smiling,” says Glusco.

The sympathetic bond between Packard and Coastal Kids is enviable. After all, how often do we run across a perfect union?

A Perfect UnionLucile Packard Children’s Hospital sends their patients home and into the capable hands of Coastal Kids’ clinical staff.

“Coastal Kids is like an extension of the LPCH team”

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Photos by: Zoie Farmer

Get to Know Our Kids

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Jette NormaN

spent the first nine weeks

of her life at Lucile Packard

Children’s Hospital

undergoing a series of

surgeries designed to

unblock her nasal passages

and to reconnect her esophagus

to her stomach.

Born with CHARGE Syndrome, a life-threatening birth

defect, Jette, now fifteen months old, is thriving despite

the challenges of her diagnosis. She crawls, albeit a bit

diagonally due to growth imbalances, sits up, and smiles.

“We’re going on our fourth pair of hearing aids and it is

difficult to get her to wear them, though she seems to

really enjoy sign language and will sign “more,” “up,” and “I

love you,” said Darlene Norman, Jette’s mom.

Jette is fed through a G-Tube, a medical device used to

provide nutrition to patients who are unable to swallow

safely or need nutritional supplementation. “Feedings

happen 6-8 times a day and each feeding takes up to 2.5

hours,” said Norman. “ She has three teachers, vision and

infant education, physical and occupational therapists,

and countless other specialists. “It’s tough. But in-home

nursing allows us to access better care, to talk to someone

who understands children like Jette and concerns we

have as parents of children with special healthcare needs.

Our Coastal Kids’ nurse Pam is great. She comes once a

week to check Jette’s weight and let us know if she has

gained or lost so we can adjust her calories. It makes

such a difference to have someone Jette knows and is

comfortable with.”

Though Jette has been thrown more than a few curves

in her short life, she’s a determined little Santa Cruzan,

weathering her difficulties like a champ.

When Coastal Kids nurse

Sarah Grove first met

Kyle martiN, he was

a very shy, easily frightened

four-year-old recently

diagnosed with leukemia. “The

first visit was a challenge,” Grove

said. “He cried and pushed me away

whenever I tried to touch his dressing. His

parents were horrified. They couldn’t imagine how we were

going to get through weekly visits for the next three years of

his treatment.”

But Grove knew that she’d win Kyle over quickly. Like

all of the other specially trained pediatric nurses on the

Coastal Kids’ staff, Grove brings essential supplies to each

home-based appointment. Those supplies include medical

necessities as well as Hello Kitty and Superman Band-Aids,

stickers, small toys, and gifts to help children deal with the

difficult parts of their treatment. “We have gotten so close

to Sarah and depend on her,” said Brenna Martin, Kyle’s

mom. “Kyle looks forward to her visits.”

Kyle is now a robust six-year-old who loves Thomas the

Train and taking care of his family’s four chickens. He has an

expansive vocabulary and loves to talk. He’s back to school

in his hometown of Hollister and thankful that his nurse can

visit when he gets home.

“Home care is wonderful!” said Martin. “My son feels safe

and comfortable having it done at home. I don’t have to

travel and I love the comfort level he has because he has the

same nurses.”

In fact, Kyle’s care team, Sarah and Sheila have been with

him since the beginning of his treatment, and will be by his

side when he finishes up this year.

Santa Cruz County San Benito County

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Give Joseph GriJalva-GallaGoes a pair of

hiking boots, and you’ll be

left staring at a cloud of dust.

The twenty-year-old Seaside

resident is a nature buff. He loves

his family, trekking the California

Coast, and sinking his bare feet into

Hawaiian sands.

Coastal Kids first met Joseph in May of 2009 when he

was diagnosed with leukemia. “He was angry, which is

understandable. Teenagers have enough to deal with,” said

Margy Mayfield, the first registered nurse assigned to his

home care. “But Joseph was a really easy-going fifteen-

year-old. He quickly learned that treatment was just a

series of ups and downs and that he needed to take it one

day at a time.”

Every week for nearly three years, Coastal Kids staff

worked closely with Joseph’s oncology team at Lucile

Packard Children’s Hospital to monitor his condition, and

provide the in-home dressing changes, blood draws and

assessments he needed to ensure his comfort and safety,

and maintain his quality of life while undergoing treatment.

“We celebrated his discharge from service in March of 2012,”

said Mayfield. “His treatment was finished and his cancer

was in remission.”

But in December 2013, Joseph’s cancer returned. Now

twenty years old, Joseph is a strapping young man bracing

himself for another fight for his life. “The only good thing

about my relapse is that I know Coastal Kids will be at my

side through all of it. I can’t imagine doing this again without

them.”

Pam Way was Joseph’s primary care nurse during the last

year of his treatment in 2011. She’ll be with him as he begins

chemo for the second time. Way comments, “Joseph is

understandably upset at his relapse, but even with all that

he is going through, he still always asks how I am doing

and genuinely cares about those around him. He is never

focused on himself, more on how he can be a good friend.”

rebecca and Daniel are five-month-old twins.

Born at 37 weeks, both

babies were considered

medically fragile from the

get-go. “They came home

from the hospital at three weeks

of age,” said mom Nicole. “But

then at a regular check-up, concerns

about Rebecca’s liver function came up. She spent seven

more weeks in the hospital. They said she might need a liver

transplant.”

Coastal Kids’ Occupational Therapist Judy Modderman

Marshal met the twins and their parents at their San Jose

home in late October 2013. She helped Nicole move along

the developmental feeding progression – assisting with

breastfeeding, bottle feeding, and transitioning Rebecca to

soft solids. “Judy has been a tremendous help, especially with

feeding. Rebecca originally struggled, but now she is learning

how to eat. She is very responsive to Judy.”

Fortunately, doctors at Lucile Packard were able to perform

a procedure to improve the blood flow to Rebecca’s liver last

December, minimizing the need for a future transplant.

According to Modderman, providing services at home,

where the family and especially the child, are in their own

environment, is ideal. “I am able to assess the child’s

development at each visit and help with peripheral feeding

skills including sitting up, progression toward crawling, reaching

and grasping.

“Judy answers a lot of our questions and she evaluates

Rebecca to make sure she is on track,” said Nicole. “There

were concerns about Rebecca’s development because she

spent so much time in the hospital, but we feel like she is

making good progress.”

As easy as it would be to assume that twins would grow and

develop in a similar fashion, that isn’t always the case. Nicole

is realistic and accepting of her baby’s individuality. “Judy is so

reassuring. She helps us understand what both kids are doing,

that they are each unique and both doing well.”

monterey County Santa Clara County

As a nonprofit, we rely on community support to

maintain our services. Here are some ways you can help:

Wish ListExtend our Reach. If you are based

in Santa Cruz or Santa Clara Counties,

and are passionate about our mission,

apply for our Board of Directors!

Bring Presents. Help our nurses

and therapists commemorate our

patient’s birthdays, holidays, or

treatment milestones with a small toy

or gift bag (only new items please).

Stuff Our Piggy. Every dollar you

give helps to underwrite home visits

for children from low-income families,

counseling support, and practical

assistance for their parents.

Fill Our Tanks. Our Clinic on Wheels is

on the road, every day, logging hundreds

of miles in our quest to bring excellent

medical care to children in need. Gas

cards will keep us fueled and ready!

Stoke Our Fires. Become a volunteer

and share your skills and expertise with

our organization. We need tech-savvy

geeks, “fun” raisers, photographers, video

nerds, and other helpful hands.

For more information, contact Kelli Brown at

800.214.5439 or write to

info@coastalkidshomecare.org

Thank you for your generosity!

CliniC on Wheels raCked up

150,000 miles for siCk kids in 2013

GoinG the distanCe

When people hear “Clinic on Wheels”, most think converted school

bus, or sixteen-wheel trailer retrofit with the high-tech bells and whistles of

a mobile clinic. But that isn’t the case at Coastal Kids. Our Clinic on Wheels

is a hodgepodge fleet of autos, the personal vehicles of the agency’s

pediatric nurses, social workers, and physical and occupational therapists.

“We call it Clinic on Wheels because

we bring medical care right into the

homes of our child patients,” says

Coastal Kids’ Director Margy Mayfield.

“Our staff lives in each of the four

counties we serve so they can respond

quickly to emergency calls. And they haul

all the equipment and medical supplies

they need for each visit with them.”

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We are so grateful for all the wonderful financial gifts we received in 2013! Thank you to the philanthropic foundations that gave breadth and scope to our work and to the individual donors who joined us in spirit at the bedside of the seriously-ill children we cared for.

Circle of Giving is our Circle of Love

Circle of Compassion ($100,000+)Hospice Foundation

Circle of Healing ($50,000+)Community Foundation for

Monterey Rudy E. Futer Fund for Human and Humane

Needs

Circle of Courage ($10,000+)Community Foundation Santa

Cruz CountyHarden FoundationNancy Buck Ransom Foundation

Circle of Promise ($5,000+)Driscoll’s PhilanthropyJoanne and Steve ShapiroUnion Pacific Foundation

Circle of Joy ($1,000+)James and Patricia BernardLewis and Sally Cantor

Central Coast Children and Families

Community Foundation for Monterey County

Entres Nous Society, Inc.Hugh Stuart Charitable TrustPacific Valley BankGordon and Vicki RosenbergStorey FoundationAlexander F. Victor FoundationYellow Brick Road Benefit Shop

Circle of Hope ($500+)Access IVMike and Lucia BoggiatoJim and Karen FanoeCary NeimanStuart and Elizabeth PaulStudent Nursing Association,

Maurine Church Coburn School of Nursing

Circle of Strength ($250+)Nora BianchiAlan Canas

Anil GursahaniRobert and Millie HouseKnitty BiddysSandra LeePatricia MitchellRichard and Janet NealeThomas NealePediatric and Adolescent Medical

Associates of the Pacific CoastGene and Diane RollerDeborah and Philippe Vincent

Circle of Care ($100+)Vern and Betty AltonMarjorie BornyaszBritish Belles ClubChristopher and Kelli BrownDavid and Reina BrownDouglas and Mary BrownPaola BruniTom and Julie BryanLura BublitzPatricia Caraccioli

David and Pat ChoateJeff and Kim Crook M. Donald CuadrezJohn and Alice DunkKevin and Julie FlandersThomas FoxBill and Nanci HatterRobert and Mary HoganDoug and Mickey Holmes Elizabeth HowellLouis and Roberta HuntingtonJulian and Verna Kershaw Sam and Shirley LavoratoMayflower HotelPatrick and Catherine MullenRobert NealeRobert and Maria O’Farrell Gary and Sharon ParkDavid PencePulford InsuranceDouglas and Jeanne StongVoranuch SuvanichMilano and Judith Valdez

Coastal Kids’ teams don’t hesitate in bad weather or when a call

comes in at two o’clock in the morning. Regardless if a patient’s

home is a three-mile sprint down Highway 1, or an off-road crawl

into the vast hinterlands of Ben Lomond, Coastal Kids’ dedicated

professionals go the distance to visit sick children.

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Clinic on Wheels Fun Facts:

Square miles covered: 7,050

Number of miles driven in 2013: 150,000

Total number of home visits in 2013: 5,893

Mileage costs: $45,000!

“Slap me 5!” – (Early summer) Kids love to give high fives. From an early age a “slap 5” means good job, great effort, you did it! Help celebrate our kids’ victories through their treatment and back to health. Slap mE 5 is a virtual (hopefully viral) campaign to raise fun and funds for Coastal Kids. Stay tuned. We’ll show you how to make your handprint count for good.

National Pediatric Cancer Awareness month – It’s September, every year. We’ll be rallying our friends to hang posters and wear buttons. It takes a village to care for a sick child. Please join us!

“Touch a Truck” (September 14, 2014) - If an educational, family adventure in the bright sunshine sounds like a good idea, come out for Touch a Truck. We’ll line them up, tractors, recycling trucks, fire trucks, antique trucks, all kinds of trucks to climb on and explore. Good fun for all, while benefiting Coastal Kids’ child patients.

Be the first to hear about our events, like us on Facebook, check our website www.coastalkidshomecare.org, or send us your email address via our website contact page. That way, we can give you a poke when all our dates our final.

www.coastalkidshomecare.org

Stories in the Making

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