Jacobs Heart Childrens Cancer Support Services

Each and every caring and compassionate person in our community appreciates the physical and emotional devastation that occurs when a child is diagnosed with cancer. What most caring and compassionate people don’t know about pediatric cancer is an estimated one-third of families of children with cancer have unmet basic needs during treatment.

Within the first six months of diagnosis, there are a cascading set of events that can trigger a financial crisis. A typical trajectory for a family includes:
● As parents transition into their new roles as caregivers, any available family leave benefits for working parents are exhausted within a very short amount of time. The family then experiences a loss in income due to reduced hours or taking unpaid leave. It’s estimated that up to 94% of pediatric cancer families will experience some degree of income loss due to work interruption, and in 30-50% of families, one parent will quit or lose their job as a result of needing time off to care for their child during treatment (Keleda et al., 2020).
● The role of a primary caregiver for a child with cancer is complex and very time consuming and has the tendency to exhaust all available resources. As parents struggle with the day-to-day logistics and complexities of treatment, they experience the inability to perform basic domestic or parenting duties for other siblings. As a result, expenses associated with childcare and meeting the needs of the siblings increase.
● During treatment, the child spends extended periods of time at the hospital and/or travelling frequently between home and hospital. As a result, expenses associated with travel, food, and lodging significantly increase. Families also face co-payments and other out-of-pocket/uncovered expenses during treatment.
● The financial burdens of treatment are experienced by all families, regardless of socioeconomic status. There are additional economic risk factors associated with higher degrees of financial vulnerability: families who were low-income prior to diagnosis, families with lower-levels of education, single-parent households, and families with additional siblings are at a much higher risk of experiencing a significant financial crisis following diagnosis.

Jacob’s Heart provides services in alignment with Maslow’s Hierarchy of Human Needs (1943), which asserts that a human’s needs exist in an order of significance; basic needs must be met before the individual can give their attention to the higher needs. Our programs address the basic needs for families of children with cancer, while building toward hope and healing, even when there is no cure.

Physiological Needs: When basic needs are not met, fears can dominate living. Until such fears are addressed and relieved, no progress can be made toward improved quality of life. Supporting parents of seriously ill children by addressing their practical needs is transformative: it relieves a significant source of outside stress, and it allows families to focus their time and resources on their child’s treatment and on the well-being of the siblings.
Practical and Financial Assistance: Direct payment of bills such as rent, phone, utilities, fuel and groceries (for families in treatment, or up to six months post-treatment or following the death of a child). Financial assistance for funeral or other expenses when a child dies.
Full Hearts: Weekly home deliveries of nutritious groceries, recipes and cooking instructions. Transportation: a) bicultural coordination to arrange transportation to medical treatment; b) pre-paid gas cards; c) door to door transportation to Palo Alto and San Francisco for treatment; d) counseling, support, interpretation and shared experience on the journey.
Safety and Security: At the moment of diagnosis, the sense of safety and security is immediately taken away from a family. The services at Jacob’s Heart are designed to give some measure of that back. With 23 years of experience, our compassionate and supportive staff provide a plan of care that is individualized to the unique needs of each family. The services that address this level of support include evidence-based practices; case management; home and hospital visits; a strong, reliable and experienced organization; and trusting relationships with trained, caring and responsive staff and compassionate volunteers.
Love and Belonging: Every family at Jacob’s Heart is part of our family of families. Peer mentorship is woven throughout our programs, providing families with opportunities to talk freely with others who “just know,” about issues they, too, have likely faced. Families gather at Jacob’s Heart to support one another, to celebrate milestones, and perhaps most importantly, to have fun. The services that address this level of support: Two family camps: Camp Heart for families of children in treatment and Forever Loved, for families bereaved by the loss of a child.
Emotional Well-Being: Social and emotional well-being starts with feeling safe, secure and valued. Our emotional well-being programs build on that foundation through individual, family and group counseling including psychotherapy, coaching, and expressive therapies.

Jacob's Heart provides support to families of children with life-threatening illnesses in both the hospital and home settings. We classify our service delivery based on a family's unique socioeconomic needs, location of care (hospital or home) and the stage of a child's medical condition: 1) Curative trajectory: cancer diagnosis has likelihood of remission and child stays on protocol; 2) Anticipatory Grief: diagnosis or complications increase likelihood of death; and 3) Bereavement: loss of minor child to cancer or other diseases/circumstances.

Through relationships built over many years with Packard Children's Hospital at Stanford and UCSF Medical Center, Jacob's Heart works with hospital staff to facilitate services between home and hospital creating a comforting presence in the hospital when a child is unable to be at home. During the child's extended hospitalizations, we are also able to support siblings and other family members who remain at home.

Jacob's Heart's direct family services are bilingual/bicultural and are in alignment with the principles of pediatric palliative care; they are designed to alleviate the emotional, spiritual, psychosocial, and practical pain experienced by families facing the potential death or death of their child.
Each year, Jacob’s Heart conducts a comprehensive community awareness campaign, which includes proclamations and presentations to local and regional governing bodies with wording recognizing Jacob’s Heart and Lucile Packard Children’s Hospital at Stanford.
In 2001, our founder, Lori Butterworth, was awarded the prestigious “Use Your Life Award” from Oprah Winfrey’s Angel Network, representing Jacob’s Heart in three appearances on the Oprah Winfrey Show. Jacob’s Heart has received numerous local awards including, but not limited to, the 2010 Monterey Peninsula Chamber of Commerce’s Business Excellence Award for Nonprofits; the KSBW/Union Bank 2010 Salute to Small Business Nonprofit Business of the Year; and the Pajaro Valley Chamber of Commerce 2002 and 2010 Organization of the Year. Our recent awards include “Best Nonprofit” from the Register Pajaronian, “Organization of the Year” from the Pajaro Valley Health Trust, and “Best Nonprofit” from the GoodTimes. Our Kidrageous Carnival won “Event of the Year” for the Pajaro Valley. Our founder was named 2019 Woman of the Year by the Pajaro Valley Chamber of Commerce, Jacob’s Heart was awarded Organization of the Year, 2020 for the Aptos Chamber of Commerce, and Teen Support Specialist and former Jacob’s Heart Teen, was honored for the Spirit of the Community from the Salinas Chamber of Commerce in 2021.

Jacob’s Heart has been certified by the Points of Light Foundation as a “Service Enterprise Center” in recognition for the organization’s ability to fundamentally leverage volunteers and their skills. According to the Service Enterprise diagnostic, the value of Jacob’s Heart’s donated goods and volunteer services in 2020 was $171,414 donated goods services supplement and sometimes exceed actual expenditures. Thus, every dollar donated to Jacob’s Heart yields twice the impact in direct services to families.
In 2020 alone, Jacob’s Heart provided essential, daily support for 325 seriously ill children and 1,189 of their family members. Here is a snapshot of what we provided in 2020:
● 11,363 hours of counseling, coaching and care management to families of children in treatment for cancer and other life-threatening illnesses (2019: 6,234 hours)
● 1,875 hours of emotional support to families bereaved by child loss (2019: 1,075 hours)
● $255,291 in direct financial assistance for rent, utilities, food, meals, fuel and funeral expenses (2019: $192,305)
● 4,920 bags of groceries were delivered by compassionate volunteers to families’ doorsteps (2019: 2,872 bags)
● 447 care packages with personalized gifts and essentials including items such as diapers, hand sanitizer, clothing, toys and household items (2019: 401)
● 504 door-to-door rides so children were able to get to treatment with comfort, companionship, and safety (2019: 536) down slightly due to COVID; our transportation program has since been upgraded with additional safety measures
● 258 home and hospital visits to help parents make informed decisions for their children
● 4,206 cards, gifts and remembrances to honor milestones, birthdays and anniversaries
● Personalized gifts and celebrations valued at $72,333 which alleviated stress and delivered joy to 403 family members through Holiday Hearts Adopt-a-Family.

The long-term goal at Jacob’s Heart is the opposite of most organizations: We look forward to a day when our services are no longer needed, and we are able to close our doors - a day when there is no more childhood cancer. Unfortunately, every year for the past 23 years, the need for Jacob’s Heart has grown. With no government funding and no reimbursement for services, every year, we rely on those who care. Our programs are not sustainable unless someone cares.