{"id":17116,"date":"2024-05-28T21:21:42","date_gmt":"2024-05-28T21:21:42","guid":{"rendered":"https:\/\/lpfch.org\/?p=17116"},"modified":"2025-05-22T21:29:28","modified_gmt":"2025-05-22T21:29:28","slug":"caught-somewhere-in-between","status":"publish","type":"post","link":"https:\/\/lpfch.org\/hy\/impact-stories\/caught-somewhere-in-between\/","title":{"rendered":"\u053b\u0576\u0579-\u0578\u0580 \u057f\u0565\u0572 \u0574\u056b\u057b\u0587 \u0568\u0576\u056f\u0561\u056e\u00a0"},"content":{"rendered":"

A cancer diagnosis is a universally devastating event, but for those on the brink of adulthood, the challenges can be especially profound. As Vivek Chotai, a former cancer patient at Lucile Packard Children\u2019s Hospital, says, \u201cBeing in a hospital at 17 puts you in a weird position\u2014you\u2019re young enough to be on the pediatric floor, but old enough to realize no amount of cards or gifts will change your outcome.\u201d<\/span>\u00a0<\/span><\/p>\n

The Stanford Adolescent and Young Adult Cancer (SAYAC) Program was created nearly a decade ago to meet the unique needs of adolescents and young adults (AYAs) with cancer. Pam Simon, NP, the director of the SAYAC program, says, \u201cIt\u2019s such a dynamic time in their lives for something like a cancer diagnosis to happen. And these AYA patients are caught in between children\u2019s hospitals and adult hospitals.\u201d<\/span>\u00a0<\/span><\/p>\n

The SAYAC program offers a wide range of support to help meet the unique needs of AYAs. This support<\/span>\u00a0<\/span>includes mental health resources, fertility counseling, and, of course, social connection and community<\/span>\u00a0<\/span>building. Simon says, \u201cI can\u2019t tell you how many times I\u2019ve heard, \u2018I\u2019ve never met another patient my age going through this.\u2019 \u2026 It\u2019s like ships passing in the night.\u201d One of the SAYAC program\u2019s priorities is helping AYAs with cancer connect and feel less alone.<\/span>\u00a0<\/span><\/p>\n

Simply knowing that others are out there can be a balm. Ayana says Voices of Our AYA<\/em><\/span>\u00a0<\/em>Community<\/em>\u2014a print magazine written by and for SAYAC community members\u2014helped her when she<\/span>\u00a0<\/span>was reeling from her lymphoma diagnosis two years ago. At the recent 16th annual Ambassadors Lunch<\/span>\u00a0<\/span>and Learn event to raise funds for the SAYAC program, Ayana said, \u201cOf course, I knew theoretically there must have been other cancer patients my age. But all the stories you hear are unfortunately about young children or the elderly.\u201d<\/span>\u00a0<\/span><\/p>\n

One story in particular gave her strength: A young lymphoma survivor had become a nurse in the<\/span> Stanford oncology unit that had treated her. In a way, the story foreshadowed Ayana\u2019s own journey: Ayana herself is now a survivor giving back to the community by volunteering through the SAYAC<\/span> program at our Bass Center for Childhood Cancer and Blood Diseases. She hopes to be a source of support to patients taking their first steps into treatment.<\/span>\u00a0<\/span><\/p>\n

\n

\"Ayana
Ayana was actively involved in the SAYAC program during her own treatment and now supports other teens and young adults beginning cancer treatment.<\/figcaption><\/figure><\/figure>\n

According to Simon, philanthropy plays an indispensable role. She says, \u201cIt enables our program not just to get started, but to keep going\u2014and really flourish.\u201d Philanthropy allows her to really listen to what AYAs in the program need and then shape the program\u2019s initiatives to respond to those needs.<\/span>\u00a0<\/span><\/p>\n

\u201cSome [AYAs] don\u2019t want to be noticed or cry out for help; they just want to get through this,\u201d Simon says. \u201cAnd the way to get through this is so different for everybody.\u201d Philanthropy helps the program offer a wide array of support, such as bringing in authors to encourage self-expression with writing prompts; sending participants to Stupid Cancer\u2019s national CancerCon; supporting education and career goals; and giving AYAs a safe, understanding, and informative space to ask questions about fertility.<\/span>\u00a0<\/span><\/p>\n

Bridging Transitions in Health Care\u00a0\u00a0<\/strong><\/p>\n

As adolescents and young adults transition into survivorship care, the SAYAC program helps them build skills to manage posttreatment life, understand the ongoing effects of treatment, and advocate for themselves in the health care system\u2014so that AYAs aren\u2019t simply dropped back into a world that feels foreign to them. Recognizing the broader need to bridge the transition from pediatric to adult care, the Lucile Packard Foundation for Children\u2019s Health provides grants to organizations such as the National Alliance to Advance Adolescent Health (NAAAH) to bolster research, policy, and advocacy efforts around youth with special health care needs as they age out of health care programs.<\/span>\u00a0<\/span><\/p>\n

Our most recent grant supports a study of the specific challenges and experiences of Black youth with special health care needs. To date, the Foundation\u2019s grantmaking program has provided more than $500,000 in grants to the NAAAH.<\/span>\u00a0<\/span><\/p>\n

To support adolescents and young adults facing cancer, visit AmbassadorsLPCH.com\/fundaneed<\/a>.<\/span><\/i>\u00a0<\/span><\/p>\n

This article originally appeared in the Spring 2024 issue of <\/em>Packard Children’s News<\/a>.<\/em><\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

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