A diagnosis of neuroblastoma (or any childhood cancer) brings with it an overwhelming number of questions, fears and decisions. When we were given Juliana’s diagnosis and prognosis, we we’re terrified, angry and confused. We we’re handed a 100-page binder and told to “learn about it”. Not exactly what you want to be told after news like this - it feels like a whirlwind of information and mixed emotions. The last thing you want to do is sit and read about this disease – but you really need to. Do it in your own time. If there is anything we can help you with, just let us know. That’s why we’re here!
Treatment decisions often need to be made quickly, adding to parents’ extreme stress in the early phases of the disease. To provide you with a solid foundation of knowledge, we’ve gathered some key resources to help you make informed decisions in the early days, weeks and months of a neuroblastoma diagnosis.
We've also included some helpful forms that you will need moving forward. It's always good to keep the little things organized in what seems like chaos!
Keeping detailed records of your child’s treatment and test results is always helpful. It allows you track your child’s progress and document any complications or reactions to chemotherapy or medications administered.
We’ve created some helpful documents for you to print and fill-out to keep for your own records or to provide to your child’s oncologist or health provider.
Financial Assistance & More
Cancer care is expensive, we know.
There are so many programs that can assist with healthcare costs, prescriptions, gas for traveling to and from the hospital, etc. We personally utilized quite a few of our own, and there’s no shame in asking for help. You don’t want to have to move out of your home where your child feels safe and comfortable during his/her treatment, and cause more stress for everyone.
We’ve compiled a list of reputable companies that offer various forms of assistance, a few that we personally used during Juliana’s battle.
NCCS – National Children’s Cancer Society - One of my personal favorites – the NCCS is a non-profit organization that offers financial assistance for parents of childhood cancer patients based on your personal needs. https://www.thenccs.org/# Phone: 1-800-532-6349
GiveForward is a great way to start an online fundraising campaign! It can be difficult to care for someone diagnosed with cancer AND to navigate the various financial resources available. Even with private health insurance, government-funded insurance plans and nonprofit aid, most cancer patients still need additional financial assistance. Click here for more information.
The Partnership for Prescription Assistance helps qualifying patients without prescription drug coverage get the medicines they need for free or nearly free. They offer a single point of access to more than 475 public and private programs, including more than 200 offered by biopharmaceutical companies. They have already helped millions of Americans get free or reduced-cost prescription medicines. Now let them help you!
PG&E’s Financial Assistance Programs
California Alternate Rates for Energy (CARE) -You can apply for a monthly discount on your energy bill through the California Alternate Rates for Energy (CARE) program if your household meets the program guidelines.
Relief for Energy Assistance through Community Help (REACH) - A one-time energy-assistance program sponsored by PG&E and administered by The Salvation Army from 170 offices in northern and central California.
Low Income Home Energy Assistance Program (LIHEAP) – A federally funded assistance program overseen by the California Department of Community Services and Development (CSD) and administered by 48 Action Agencies throughout California.
Kaiser MFA (Medical Financial Assistance) – Provides temporary financial assistance or free care to patients who receive health care services from our providers, regardless of whether they have health coverage or are uninsured. Visit their site to learn more:
Benefits.gov can help you identify grants, loans, financial aid, and other benefits from the federal government, determine if you are eligible, and then tell you how and where to apply.
When looking for financial assistance, remember that there are differences between grants and loans. You are required to pay back a loan, often with interest.
Grants.gov You are not required to pay back a grant, but there are very few grants available to individuals. Most grants are awarded to universities, researchers, cities, states, counties, and non-profit organizations.
Juliana's Journey Foundation
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