Meet Claire.

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Meet Claire.

 

Claire is rare and she don't care.

Claire Watson is rare.  She is not rare because she is only 3 ½ feet tall or because she will be turning 12 in March, despite being told she wouldn’t live past her second birthday.  Clair is rare because she has taught her family and everyone around her that each day of life should truly be enjoyed.

Despite a normal pregnancy, Claire Watson was born with Mucolipidosis type II.  Mucolipidosis (also known as I-cell disease), a progressively debilitating disorder that affects many parts of the body.  However, it was not until her three-month check up that her pediatrician noticed she wasn’t developing as she should. After months of worrying and running tests, at five months, the Watson family was given a life expectancy of just two years for Claire.  “It was devastating to hear Claire would most likely not live past her second birthday,” her mother Susi Watson recalls. “All you can think is my daughters are supposed to grow up together.”

Upon diagnosis, Claire’s father, Matt, began reaching out to other resources and support groups.  The Watson family continued countless trips to Lucille Packard’s Children’s Hospital and looked into many options, including a bone marrow transplant which could have delayed effects and give Claire a longer life.  Yet, after countless hours discussion the different options that would only delay the inevitable, Susi and Matt decided not to proceed with treatments and began their journey of celebrating Claire’s life.  Her second birthday came and went, then her third, and fourth, and finally the Watson family threw Claire a big birthday party at age 5.  But Claire’s life didn’t stop there. Beating all odds, Claire is awaiting her 12th birthday in March.

“I am so proud of [Claire],” Susi says.  “She is resilient. She has made me compassionate and has taught me to smile and laugh alot.  We know that she won’t live to see her 20th birthday, but she has taught me to not live life with ‘What ifs’.”

Although Susi admits it took until about Claire’s fourth birthday to fully accept the circumstances, she also admits it was the best decision she could have made.  She began joining support groups and began her search for help with Claire.  

“It was hard at first,” Susi explains.  “People from other states who had children with Claire’s condition went directly on hospice.  We were so confused as to why there was nothing like this near us. We asked around and eventually moved on, but it was always in the back of my mind.”

About a year ago, the Watson family went to a Sharks Hockey game and heard that the 50/50 raffle would be benefiting a local organization called, Coastal Kids Home Care.  Susi had always been told there were no programs in the bay area for children like Claire, so when she heard that CKHC was a home health care agency for children with serious illness, Susi says it “stood out” to her.

“I was shocked to hear that there was an agency providing support for children like Clair,” says Susi.  “We had been offered some services by adult agencies, but I would rather be with an agency that is for kids and designed for kids.  It feels like home because they know children and understand what parents go through. When an agency has a program for a child, it means they want to be there and they want to help you.”

Claire will never be “normal” by societal standards, but Susi has done her best to keep things as “normal” as possible.  Claire goes to school, plays at the park, and even gets a timeout every now and then. Because of this, Susi says you “forget she is limited,'' because Claire wants to do what the other kids are doing.

“It is hard to find people to relate to you, but I don't expect them to,” Susi says. “When I see my family, or when I talk about Claire, I don’t see it as difficult.  I see it as I am a mom of four, just trying to raise them to my best ability and enjoy every single moment I have with them.”

Fast forward nineteen months and Isla is crawling and pulling to stand. Today, Isla is still fighting – though surrounded by loving parents, a big sister, and dedicated nurses – her battle to learn, grow and stay healthy is a lot easier.

“I was shocked to hear that there was an agency providing support for children like Clair,” says Susi. “We had been offered some services by adult agencies, but I would rather be with an agency that is for kids and designed for kids. It feels like home because they know children and understand what parents go through. When an agency has a program for a child, it means they want to be there and they want to help you.”   -Susi Watson

Meet Isla.

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Meet Isla.

 

Getting Isla Home.

Isla Elliot gets her fighting spirit from her mom. Isla was born with CHARGE Syndrome, a rare genetic condition which impacts her ability to see, hear, eat and breathe safely. Isla’s first few months were precarious. Her fragile respiratory status meant she was dependent on oxygen, a ventilator, continuous feeds, and very vulnerable to infection. With Isla requiring constant monitoring, her parents only option was long-term hospitalization in a pediatric subacute care facility. Going home without their daughter was devastating.

Yessica, Isla’s mom, remembers, “I wanted to bring her home so badly. It was a crazy time. I tried to be with Isla a few hours every day, all while working and balancing care for our other daughter. My husband worked full-time too and quitting one of our jobs was impossible. I didn’t know what to do, but I knew I wanted her home.” Thus, began Yessica’s battle. “I posted online and asked everybody for ideas on how to get Isla home.”

Finally, Yessica heard about Coastal Kids Home Care from the mom of another medically fragile toddler. A month later, when she was fourteen months old, Isla finally came home with round-the-clock shift nursing through Coastal Kids.

“She brought my kid home,” says Yessica.  “Margy is an incredible and amazing person. She is always so kind and on top of everything and she understands what it takes to have a child with medical disabilities at home.  Any time we have had issues with nursing, she is on top of it and constantly trying to find whatever we need.”

Fast forward nineteen months and Isla is crawling and pulling to stand. Today, Isla is still fighting – though surrounded by loving parents, a big sister, and dedicated nurses – her battle to learn, grow and stay healthy is a lot easier.

“[Margy] brought my kid home.  She is an incredible and amazing person. She is always so kind and on top of everything and she understands what it takes to have a child with medical disabilities at home.  Any time we have had issues with nursing, she is on top of it and constantly trying to find whatever we need."   -Yessica Elliott

Meet Amy.

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Meet Amy.

 

Remembering Amy and her kind heart.

Today marks the beginning of Dia de los Muertos, a two-day holiday celebrated in Mexico and other Central American countries and among their diaspora here in Central California. Many people don’t know that Día de los Angelitos (Day of the little Angels) is celebrated on November 1st and happens the day before the big events of November 2. It’s said the spirits of children are so eager to come back to the land of the living, that they run ahead of the adults, who arrive a night later.

This November 1st, Amy's family will remember their beloved daughter, Amy, who died from cancer in 2017 shortly after her 15th birthday (Quinceañera). They will share precious photos, tamales, bread, fruit and other items, and display them at an altar. Her parents, twin sister and other family members will honor her memory, “Amy was kind and cared for others deeply,” says mom.  “She loved animals and wanted to be a veterinarian. She loved her family, especially her little brother.”

This year, the celebration is especially poignant. For Amy’s special wish was that her parents would have another baby – and in early 2019 her mom gave birth to a new baby sister.  “All she wanted before she died was for me to have another baby,” mom recalls.  “Now I have a new baby and my other two children that I must stay strong for; for Amy.”

At Coastal Kids Home Care we are honored to provide palliative and end-of-life care to children like Amy in Monterey County and bereavement care for their families. Our compassionate services are made possible through the generous support of Hospice Giving Foundation. This November 1st, Coastal Kids Home Care would like to thank the Hospice Giving Foundation for ten years and nearly $1M of support for palliative and end-of-life care for children in our community and bereavement support for their families. On behalf of Amy's family and the other families we have cared for, we thank you.

“Now I have a new baby and my other two children that I must stay strong for; for Amy.”” -Amy's Mom

Meet Alexander.

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Meet Alexander.

Remembering Alex and each invaluable moment his family shared with him at home.

“It’s never over for us.  We deal with this unimaginable pain everyday and Coastal Kids hasn’t forgotten that the grieving will go on.  There have been other organizations that have helped in other ways, but no one else has the nursing, end-of-life care, and counseling services Coastal Kids does.  They are the only ones that will stand next to you and help you fight before, during, and after a loss of a child.” 

In 2010, Alex McCrone was diagnosed with Rhabdomyosarcoma an aggressive type of soft tissue cancer – he was just four years old. His parents, Paul and Sasha, were plunged into a new routine of long hospital stays, painful procedures and complex treatment and medication regimes - all while trying to balance work and parenting. Alex also met Coastal Kids that year, when he returned home from treatment, nurses came to his north Salinas home to draw labs and monitor his symptoms. Over the next eight years the McCrones battled through two remissions, and when cancer recurred for the third time they continued to explore every option to help their bright, funny eleven-year-old. 

In early 2018, Alex’s tumor was spreading again. He was no longer able to walk and his doctors at Stanford encouraged the family to go home to spend time together.  Paul McCrone says this was when Coastal Kids had the biggest impact in their lives. “When we came home, we were completely overwhelmed.” Coastal Kids rallied to support the entire family.

According to Paul, “Margy and the Coastal Kids nurses were angels. They offered expert nursing advice, helped us fight difficulties with our medical insurance and develop ideas to keep Alex home sustainably.  They worked through problems we didn’t know how to handle, and sent counselors to help manage the swirl of emotions that surrounded everything we were going through... You hope to never be in this situation, but since we were, we are so thankful to have had Coastal Kids.”

Today, nearly one year after Alex’ passing, Coastal Kids counselor, Kate Hulse, AMFT, continues to meet with Paul and support Alex’ two brothers -- helping them to cope with their loss.  Through communication, journaling, and personal connections, Hulse believes that the family has come a long way in the healing process. “Grief is like love with no place to go,” Hulse says.  “Love seems tangible when a child is alive, but once a child is gone, creating a relationship with them seems to beg the question, ‘Where will that love go?’” 

For the McCrones, while the pain of their losing Alex is present every day, they cherish precious memories of his sweet smile, philosopher spirit, generous heart -- and each invaluable moment they shared with him at home.

“Margy and the Coastal Kids nurses were angels. They offered expert nursing advice, helped us fight difficulties with our medical insurance and develop ideas to keep Alex home sustainably.  They worked through problems we didn’t know how to handle, and sent counselors to help manage the swirl of emotions that surrounded everything we were going through... You hope to never be in this situation, but since we were, we are so thankful to have had Coastal Kids.” -Paul

Meet Victoria.

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Meet Victoria.

Greeting life with a smile while under close watch of Coastal Kids team.

At a time when other kids in her class were worried about typical middle school issues – Victoria was just starting the battle of a lifetime. Diagnosed with Acute Lymphoblastic Leukemia at age 12 she underwent chemotherapy treatment which left her with side effects no preteen girl wants. She lost her beautiful black hair, lost weight and then gained weight due to the other medications she was on. Through it all she remained positive.

Coastal Kids nurses visited her bi-weekly to draw blood and monitor her symptoms. These visits were also an opportunity for Victoria to share her frustrations about treatment, and regular middle school angst. Through it all she built strong relationships with her them. They describe her as really brave, but also funny. “Victoria loved to tell stories, she was super sweet and loved to talk about her friends.”

Victoria was thrilled when in the spring of 2018 she was selected to participate in a professional photo shoot. She dressed up, picked out her favorite hat and wig and posed with her brand-new puppy. Today copies of those extraordinary photos are in her house, the Coastal Kids office and one even received a prize from a prestigious California photography competition. Today, Victoria is in her maintenance phase and her prognosis looks very good. Although she does not see her nurses much anymore, she has formed a lifelong bond with them, “The nurses who have come to our home have been beyond amazing.  It has been an amazing experience with them.”

““The nurses who have come to our home have been beyond amazing.  It has been an amazing experience with them.” -Victoria

Meet Abigail.

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Meet Abigail.

Abigail was born premature with difficulty breathing. With the help of her team at CKHC, Abigail is growing stronger every day.

Nora Marquez dotes on her precious baby girl. When Abigail was born in 2016, she was a wee 1lb 10oz and her early months in the neo-natal intensive care unit at UCSF were complicated by challenges with breathing and eating. Doctors placed a g-tube to support nutrition and weight gain and a tracheostomy to protect her fragile airway.

When Abigail was ready to come home at age seven months, Coastal Kids was there to help. Just before the holidays Abigail returned home to the single room she shares with her mother and two brothers in a small apartment. Her nurse, Robin, was there to greet them and support her mom Nora with her daughter’s ongoing feeding challenges and to assist with weekly tracheostomy changes.

Abigail was admitted to the Partners for Children Palliative Care program in Santa Cruz County. This dynamic program offered Abby and her mom additional support through social work, massage therapy and respite care.  Abby receives regular massages to help her flexibility and mobility. Her mom, Nora, is thankful for the lifeline that Coastal Kids has offered to her family and she regularly sends nurse Robin updates on Abigail with little messages like, “I don't know what I would do without Coastal Kids Home Care."  Nora avidly follows Coastal Kids on social media and we are so thankful to have her be apart of our Coastal Kids family.

“I don’t know what I would do without you guys” -Nora (Abby’s mom)

Meet Christian and Jeremiah.

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Meet Christian and Jeremiah.

Building confidence to manage their chronic condition at home with help from CKHC.

Bumps and scrapes are a normal part of childhood. For most kids, a tumble off a bike or a tough kick in a soccer game mean only a temporary bruise or a cut that heals quickly. However, for Christian Perez, these everyday mishaps can have serious consequences. Christian has hemophilia, a genetic disease that prevents his blood from clotting. As a result, simple injuries can result in significant blood loss or dangerous internal bleeding.For an active eleven-year-old who loves sports, having hemophilia means he often misses out on playing soccer with his friends.

Fortunately for him, he is able to receive Factor VIII transfusions, they replace the missing protein in his blood and make day to day activities safer. Since 2005, Coastal Kids Home Care nurse Kim has been checking in on him monthly - first to flush his port to ensure safe transfusions and later to work with his mom and him on learning how to do external transfusions so that his port could be removed.

Today, Christian is nearly independent of Coastal Kids. He gives himself transfusions 3-4 times each week. With the help of Kim, Christian is also teaching his brother, Jeremiah to manage his hemophilia too. Soon both Perez boys will be playing fewer video games and more soccer - without the fear of those minor bumps and bruises. According to Kim, “Empowering kids like Christian and Jeremiah to take responsibility for their own care makes a huge difference in their confidence and their ability to just be kids.”

“Coastal Kids has a family vibe. It’s not just about the services its about the relationships they build. They are an extra support system that takes a lot of stress off our shoulders” - Christian and Selena