Welcome back! This blog provides financial resources and information for people living with cancer. In this post, I want to focus on resources for childhood cancer.
Being told that your child has cancer is devastating. It is tempting to put all thoughts about money on hold and concentrate only on cancer treatment. However, you can focus on both throughout this emotional roller coaster. Organization is key to utilizing available resources in your area. Most pediatric cancer treatment teams have a patient navigator, social worker, or financial counselor on staff. Ask them for financial assistance as you and your child move forward on this journey.
Where do I start?
Your first and most important priority is your child. Once a diagnosis is made, talk with your healthcare clinician about treatment options. You may need to get a second opinion and/or travel to a children’s hospital that specializes in pediatric cancer treatment. Talk with your child about their diagnosis. As parents, we want to protect them from being frightened. But kids are instinctive, and they have already sensed your fear. They already know something is wrong. They are already frightened. Be open and honest in an age-appropriate manner. Cancer.Net offers the following guide: How A Child Understands Cancer | Cancer.Net
Next steps:
After a cancer treatment plan, location and schedule have been determined, it is time to get organized.
- Talk with your child’s cancer treatment team about schedules and potential side effects that may result in you missing work. Be realistic in your ability to resume working during this extremely emotional time.
- Once you have a general idea of how much time off you will need, talk with your manager or your employer’s Human Resources (HR) department for options. You may be eligible for FMLA, see FMLA -The Family and Medical Leave Act | Living with cancer take my hand or donated sick time from your colleagues.
- If you do not have a generous amount of paid time off hours saved, and are unable to use donated sick time, you may be eligible for time off without pay. Plan for a decreased income for the timeframe of your child’s treatment.
- Only as a last resort should you quit your job, particularly if you carry the health insurance benefits. Talk with your child’s treatment team and your HR department before making this decision. Part time employment can be an option that may allow for continued health insurance benefits. Commercial health insurance plans may offer greater flexibility in treatment options.
Financial help:
Childhood cancer treatment can be financially exhausting. Even if you can maintain your income and health insurance benefits, other expenses can be overwhelming. Federal financial assistance plans, such as SSI, require a lower household income and also that your child be “disabled” for at least 12 months- Understanding SSI – SSI for Children (ssa.gov). As leukemia and cancers of the brain and central nervous system make up an estimated 50% of all childhood cancers, treatment may extend 2-3 years. Often, children who qualify for SSI also qualify for Medicaid. Talk with your cancer treatment team as early as possible to determine if this is an appropriate next step.
Contact your state’s Department of Human Services to determine what financial assistance programs are available. New Jersey offers a Catastrophic Illness in Children Relief fund. For details, go to: Department of Human Services | Catastrophic Illness in Children Relief Fund Commission Home (nj.gov). Some counties also offer bridge loans to cover the cost of a pediatric diagnosis.
Additionally, many pharmaceutical companies offer financial assistance to pay for cancer treatment medications. For more information, go to: Pharmaceutical Assistance Programs | Living with cancer take my hand
Another resource that can connect you to local organizations is calling 2-1-1. This call center offers information and provides referrals to health and human services for everyday needs and in times of crisis. Services vary from community to community.
Charitable organizations that offer financial assistance:
Family Reach – A financial lifeline for families fighting cancer.
Joes House – a Lodging Guide for Cancer Patients
Ronald McDonald House Charities | RMHC
How to Receive Help | B+ (bepositive.org)
Grant Eligibility Requirements | UnitedHealthcare Children’s Foundation (uhccf.org)
Request Funding | First Hand Foundation
I hope this information is helpful. If you would like to continue this conversation, please click on the Subscribe button at the top of the Blog page. I would love to hear your comments as well as resources that have worked for you. Please share this information with your family and friends.
Keeping you in my prayers,
Jackie
