Resources for Parents
The beginning of treatment can be overwhelming for the patient, siblings, parents, and other caretakers. We’re here to help.
How to Care For Your Child At Home
Going home for the first time after your child's diagnosis can involve mixed emotions. Once your child’s treatment starts, you need to be prepared for how to care for your child at home. Below are answers to a few practical questions about your home, siblings, and visitors.
How do I keep my child safe from germs?
- Be selective of visitors you allow in your home. Your child’s health is your top priority, and their ability to fight germs will be limited throughout their treatment.
- Hand washing is critical! Keep a roll of paper towels at every sink for hand drying, and keep hand sanitizer when you are out.
- Use Clorox wipes for everyday items like phones, computer keyboards, hand-held games, or TV remotes.
- Fill the bathtub with warm water and a cup of Clorox, and give all your child’s favorite plastic toys a bath. Then, when they are ready to play, the toys will be prepared for them!
What about visitors?
Visits from friends and family can be very healing but also exhausting. Set limits in advance on how many visitors at once and how long they can stay - and always follow your oncologist's recommendation for exposure to germs through playing with other children. Your child's ability to be around large groups or friends may vary based on their blood counts during chemotherapy.
What foods can my child eat?
You will need to check with your physician regarding your child’s specific dietary limitations, but here are some best practices:
- Please check with your physician about consuming raw or undercooked proteins and sushi. Your child’s ability to eat these foods will likely be limited.
- If your child Is allowed to eat uncooked fruits and vegetables, ensure they are washed thoroughly!
- Deli meats are likely okay, but you can always ask the market to clean the machine or use pre-packaged meats.
- Do not hesitate to tell your favorite restaurants about your child's condition so they can take extra care when preparing your food.
What side effects should we be prepared for?
- Nausea and vomiting are common side effects of chemotherapy. You may want to keep a 'bucket' or emesis bag handy - especially in the car. You may find that once nausea passes, your child will be ready to play and eat again, sometimes right away.
- Monitoring temperature is critical—you may be advised to check your child’s temperature frequently and, as always, listen to how your child is feeling. An oral temperature of 100.4 can be urgent for a child with cancer and will require a call to the doctor. Do not give over-the-counter medications for a fever during treatment without consulting your doctor first.
When can my child go back to school?
In most cases, the first few months of treatment require multiple weekly clinic trips, making going back to school full-time difficult. Every child’s treatment requires different precautions… some may be back at school within a month or two, and others may need to stay away from school for longer.
- Ask your Child Life Specialist about their back-to-school programs. They can help you inform the school of your child’s educational needs and educate your child's classmates on what to expect.
- When your child is ready to return to school, inform them of your child's treatment protocol and set up a plan. This may include a “504” plan, which allows you to request homework be emailed home, an extra set of books for your child to use, permission to wear a hat, and other accommodations.
Financial Information/Social Security Benefits
If your child has been diagnosed with cancer, the last thing on your family’s mind should be your finances. Unfortunately, cancer treatments for children can cost over $500,000, which does not include the additional expense of gas for driving to and from the hospital or hiring sitters for other children. To help alleviate the financial burden that thousands of families experience every year, the Social Security Administration (SSA) offers monthly benefits for children with advanced forms of cancer.
What is Supplemental Security Income?
Supplemental Security Income, or SSI, is a disability benefit the SSA offers for lower-income adults or children. Although children of any age can qualify for SSI benefits, your family’s household income will be evaluated when applying. If you or your spouse have a high income, your child will not qualify. The SSA has a rough outline of how much your household can earn monthly and still have a child who qualifies for SSI.
The maximum monthly SSI payment your child could receive is $733, although most children receive around $500. Some states choose to supplement these payments, though, so your total payment may be higher. Children on SSI can often qualify for Medicaid as well. Most states will automatically enroll children into Medicaid after the child is approved for SSI. This resource will show you if your state approves SSI applicants for Medicaid.
How does my Child Medically Qualify?
Whenever the SSA evaluates an application, it uses a medical guide known as the Blue Book. The Blue Book lists hundreds of disabilities that could qualify for benefits and exactly which test results or symptoms are needed to qualify.
Childhood cancer is in Section 113.00 of the Blue Book. Each form of cancer has different qualifications for disability benefits. For example, a diagnosis of any malignant solid tumor will qualify for at least 24 months, but, cancer of the eye must have spread to other regions of the body or resist treatment for your child to qualify. Be sure to review the listing with your child’s oncologist to see if he or she qualifies.
Compassionate Allowances and Childhood Cancer
The SSA will quickly approve some conditions that clearly need financial assistance. This list of conditions is known as the “Compassionate Allowance List.” Most forms of childhood cancer will qualify for a Compassionate Allowance if one of the following is met:
- Your child’s cancer has spread beyond its local point of origin
- Your child’s cancer is inoperable
- Your child’s cancer has returned despite treatment
Children who qualify for a Compassionate Allowance are approved much quicker than typical applicants. Instead of waiting for months or longer, your child can be approved in as little as ten days if diagnosed with an advanced stage of cancer.
Applying for Benefits on Behalf of Your Child
The first stop for any parent applying for a child should be the SSA’s Child Disability Starter Kit. It will outline everything you will need to use, from forms that must be filled out to financial and personal documents you’ll need to present to the SSA.
To complete the application for your child, you’ll need to stop by your closest SSA office for an interview. You can schedule an appointment by calling your nearest office or the SSA’s national number at (800) 772-1213.
This information was culled from Social Security Disability Help. For any additional information, please email help@disability-benefits-help.org or call (857)366-7629.
