Meet Alex.
Rhabdomyosarcoma
“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.”
Two years 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.”
--Alex's Dad