Alexander McCrone

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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