Love Like Lexi is preparing to establish three different types of support programs for families with children in treatment for childhood cancer.
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1 in 4 families lose 40% or more of their income as a result of treatment-related work disruption, and 1 in 3 families face other work disruptions such as having to quit work or change jobs. At the same time, out of pocket expenses increase due to medical bills, travel, parking and food-related expenses acquired over years of required inpatient and outpatient hospital visits for standard treatment. This leaves most families in a financial deficit and the extra burden of worrying about providing for their family's basic needs all while fighting for the life of their child with cancer.
Eligible Love Like Lexi families will be given regular financial support that they can rely on and choose how and when to spend throughout their treatment journey, no matter how long it lasts. Families will be set up with a Love Like Lexi account that will be credited with a certain dollar amount at regular intervals while they are in active treatment. Credits can be used to purchase a variety of basic expenses (gas cards, food/grocery gift cards, house cleaning services, utility bill payments) or can be saved up over time to cover larger expenses such as rent or mortgage payments.
Families have varying levels of support systems that are willing to stand with them as their child fights cancer.
Love Like Lexi will build a community of relational support specifically for childhood cancer families living in the Temecula Valley. Relational support will look like:
support groups and events for kids in treatment for childhood cancer
support groups and events for siblings of kids in treatment
support groups and events for parents of kids in treatment
free babysitting services
grocery shopping, running errands
Kids who are diagnosed with high-risk neuroblastoma currently have a 50% chance of survival. Neuroblastoma is also rare enough that there are only a handful of doctors and hospitals throughout the country that have the expertise to navigate the complicated treatment required for such an aggressive cancer that requires highly toxic treatments. Oftentimes, parents are faced with making high-stakes treatment decisions in the best interest of giving their child the best chance to land in the 50% of children who survive neuroblastoma.
Love Like Lexi will create resources to help neuroblastoma families make informed treatment decisions for their kids. We will put in the work to curate and synthesize the existing research and published clinical studies to create resources that are easily digestible and accessible for families. All resources will be vetted and approved by a medical advisory committee.
Love Like Lexi also supports the most promising basic and translational research that will lead to a cure for neuroblastoma, so that this will no longer be an issue for kids or families on the long term.