Childhood Cancer

Childhood Brain and Spinal Cord Tumors

Keeping financial records

You will not need a calendar or journal for financial records, just a big, well- organized file cabinet. It is essential to keep track of bills and payments. Dealing with financial records is a major headache for many parents, but keeping good records can prevent financial catastrophe. Financial record-keeping is most important in countries such as the United States, where most individuals are covered by private medical insurance. In countries with standardized healthcare, such as Canada, parents never receive a bill for their child’s cancer treatment. The following are ideas about how to organize financial records:

  • Set up a file cabinet just for medical records.
  • Have hanging files for hospital bills, doctor bills, all other medical bills, insurance explanation of benefits (EOBs), prescription receipts, tax-deductible receipts (e.g., tolls, parking, motels, meals), and correspondence.
  • Whenever you open an envelope related to your child’s medical care, file the contents immediately. Don’t leave it on the desk or throw it in a drawer.
  • Keep a notebook with a running log of all tax-deductible medical expenses, including the service, charge, bill paid, date paid, and check number.
  • Don’t pay a bill unless you have checked over each item listed to make sure the charge is correct.
  • Start new files every year.

To be honest, the paper trail really gets me down. I can only deal with the stacks every few months. I open things and make sure the insurance company is doing its part, and then I try to sort through and pay our part.


Deductible medical expenses

I started out organized, and I’m glad I did because the hospital billing was confusing and full of errors. I cleared out a file cabinet and put in folders for each type of bill and insurance papers. I filed each bill chronologically so I could always find the one I needed. I made copies of all letters sent to the insurance company and hospital billing department. I wrote on the back of each EOB any phone calls I had to make about that bill. I wrote down the date of the call, the person’s name who I spoke to, and what she said. It saved me a lot of grief.

It is estimated that families of children with cancer spend 25 percent or more of their income on items not covered by insurance. Examples of these expenses are gas, car repairs, motels, food away from home, health insurance deductibles, prescriptions, and dental work. Many of these items can be deducted from federal income tax. Often parents are too fatigued to go through stacks of bills at the end of the year to calculate their deductions. If a monthly total is kept in a notebook, then all that needs to be done at tax time is to add up the monthly totals.

The Internal Revenue Service (IRS) generally allows you to deduct any reasonable cost for procedures or expenses that are deemed by a doctor to be medically necessary. You may also deduct certain ancillary expenses with proper documentation; some of the costs that are currently deductible include wheelchairs, wigs, acupuncture, psychotherapy and counseling, and HMO fees, special education or tutoring costs for sick children, meals at the hospital, parking at the hospital, and transportation and lodging costs while your child is in the hospital.

To find out what can be deducted legally for the years your child is undergoing treatment, get IRS Publication 502 for the relevant tax year. You can download this publication from the IRS website at or make a copy from a hard-copy master at your local library. You can contact an IRS representative at (800) 829-1040, Monday through Friday.

Canadian families are able to deduct many of the same medical expenses as U.S. families. To find out what can be legally deducted in Canada, visit the Revenue Canada website at and type in the search term “deductible medical expenses,” or call (800) 959-8281.

If you keep a calendar, an easy way to keep track of tax-deductible items is to glue an envelope to the inside cover. Whenever you incur an expense that may be tax deductible, put the receipt in the envelope and file it when you get home.

Dealing with hospital billing

Unfortunately, problems with billing are common for parents of children with cancer. Here are two typical experiences:

Insurance was an absolute nightmare. It almost gave me a nervous breakdown. After all we go through with our children, to have to deal with the messed-up hospital billing was just too much.

We would stack the bills up and try to go through them every 2 or 3 months. Our insurance was supposed to pay 100 percent, but the billing was so confusing that they refused to cover some things because it wasn’t clear what they were being billed for. The hospital frequently double billed, especially for prescriptions. We just stopped getting our prescriptions there.

We would call them to try to get the mess straightened out, but the billing department was just as confused as we were. They kept sending our account to collections. We did everything in our power to get it straight, but we never did.


We had two distinctly different experiences at the two institutions we dealt with. The university hospital where my daughter received her radiation gave me a folder the first day. It included, among other things, a sheet from a financial counselor giving all the information needed for preventing and solving billing problems. I never needed to call her because the hospital billing was clear, prompt, and organized.

The children’s hospital where my daughter was a frequent inpatient and clinic patient was another story altogether. They billed from three different departments, put charges from the same visit on different bills, frequently over-billed, continuously made errors, and constantly threatened to send the account to collections. I never spoke to the same billing clerk twice. It was a never-ending grind and a constant frustration.

It is impossible to prevent billing errors, but it is necessary to deal with them. Here are step-by-step suggestions for solving billing problems:

  • Keep all records filed in an organized fashion.
  • Check every bill from the hospital to make sure there are no charges for treatments not given or errors such as double billing.
  • Check to see if the hospital has financial counselors. If so, make contact early in your child’s hospitalization. Counselors provide services in many areas, including help with understanding the hospital’s billing system, billing insurance carriers, understanding explanations of benefits, managing hospital/insurance correspondence, dealing with Medicaid, working out a payment plan, designing a ledger system for tracking insurance claims, and resolving disputes.
  • If you find a billing error, call the hospital immediately. Write down the date, the name of the person you talk to, and the plan of action.

I often couldn’t even get through to the billing representative; I was just put on hold forever. Then I tried to discuss the problems with the director of billing, but she was never in. After about 20 phone calls, I finally said to her secretary, “You know, I have a desperately sick child here, and I have more important things to do than call your boss every day. I’ve been as patient and polite as I can. What else can I do?” She said, “Honey, get irate. It works every time.” I told her to put me through to somebody, anybody, and I would. She connected me to the person who mediates disputes, I got irate, and we went through all the bills line by line.

  • If the error is not corrected on your next bill, call and talk to the billing supervisor. Explain the steps you have already taken and how you would like the problem fixed.

The hospital billing was so bad, and I had to call so often, that I developed a telephone relationship with the supervisor. I always tried to be upbeat, we laughed a lot, and it worked out. She stopped investigating every problem and would just delete the erroneous charge.

  • If the problem is still not corrected, write a brief letter to the billing supervisor explaining the steps you have taken and requesting immediate action. Keep a copy of each letter that you write and all written responses.
  • Every time you receive an EOB from your insurance company, compare it to the hospital bill. Track down discrepancies.
  • If you are inundated with a constant stream of bills and there are major discrepancies between the hospital charges and what is being paid for by your insurance, ask both the hospital billing department and your insurance company, in writing, to audit the account. Insist on a line-by-line explanation for each charge.

Within 5 months of my daughter’s diagnosis, the billing was so messed up that I despaired of ever getting it straight. When the hospital threatened to send the account to a collection agency, I took action. I wrote letters to the hospital and the insurance company demanding an audit. When both audits arrived, they were $9,000 apart. I met with our insurance representative, and she called the hospital, and we had a three-way showdown. We straightened it out that time, but every bill that I received for the duration of treatment had one or more errors, always in the hospital’s favor.

  • If you are too tired or overwhelmed to deal with the bills, ask a family member or friend to help. That person could come every other week, open and file all bills and insurance papers, make phone calls, write all necessary letters, and even scan your records into your computer for storage.
  • Don’t let billing problems accumulate. Your account may end up at a collection agency, which can quickly become a nightmare.

Our insurance was constantly months behind in paying our bills to the Children’s Hospital. The hospital sent our account to collections, despite my assurances that I was doing everything I could to get the insurance to pay. We were hounded on the phone constantly by the collection people, often until we were in tears. We finally just took out a second mortgage and paid off the hospital, but now I don’t know if we will be reimbursed by insurance.

Not all stories are so grim. People who are in a socialized healthcare system, some managed care systems, or on public assistance never even see bills. Many people with insurance encounter no problems throughout their child’s treatment.

Our insurance paid 80 percent of everything, no questions asked, and always paid us within a month. People shouldn’t have to worry about finances or their insurance program at a difficult time like this.


We have a low income, so we are on the state plan. They give us coupons for each child, and we just hand over a coupon at each visit. I have never seen a bill.


Although hospital billing was not ever perfect anywhere we went, we did have an absolutely great relationship with our regional HMO for 4 years. Whenever an out-of-area appointment was needed, I called the pediatrician to start their paperwork, then immediately let our insurance nurse coordinators know. We also kept in touch through phone calls and cards. Michael and Gail were interested in our son and his progress, and we will never forget their support.