Navigating Treatment: Before, During and After | Pediatric Brain Tumor

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When your child is diagnosed with a brain tumor, you’ll quickly find that an entire team of doctors, nurses and other specialists are involved in your child’s treatment regimen. You will also likely be spending considerable time at the hospital, clinics or doctors’ offices, depending on your child’s tumor type and diagnosis. All of these events can be anxiety-provoking for both children and adults.

Educate yourself

As is the case when any major illness is experienced by a family, you will want to learn about and better understand the diagnosis and how brain tumor treatments and follow-ups typically proceed. Although every case is different, you should learn as much as you can about what is the usual patient experience so you can ask questions as your child’s individual situation unfolds.

The ABTA article “Navigating the Health System” is a useful starting place where you will find information about:

  • Hospital schedules and routines
  • The titles and roles of the various healthcare professionals who may work with you and your child
  • Communicating with the healthcare team
  • Appointment preparation
  • Getting a second opinion
  • Clinical trials

While the information in the article, holds true for most brain tumor patients, there are a few additional tips and specifics that may be helpful for parents of children with brain tumors during treatment in the hospital.

Navigating health insurance

One of the first steps as you begin to navigate the health system is to acquire a thorough understanding of your insurance policy. If you do not have private health insurance, learn more about your health insurance options.

If you do have health insurance, obtain a copy of your policy through either through the mail or by printing it out from your insurer’s web site. Dealing with a major illness requires a depth of knowledge about your child’s condition as well as the ins-and-outs of your insurance policy. You’ll need to learn what services are covered and how the payment system works.

For complex cases, some insurance companies will assign you a case manager. If so, it is useful to take advantage of this service, which provides you with a single point of contact who will be knowledgeable about your case. If this person is unfriendly or unhelpful, ask for someone else. 

Other tips for handling insurance issues include:

  • Document every phone call with the insurance company. Write down the name of the person you speak to, the date and time, and the topic discussed. The ABTA’s downloadable Insurance Log worksheet can help you keep track of this information.
  • Fill out every form completely. Payment may be delayed or denied if required information is missing.
  • Find out whether you need pre-approval or authorization for tests, procedures, and visits to specialists beyond your child’s primary doctor.
  • Within your child’s treatment team, get to know the primary contacts who can help provide pre-authorizations or referrals for your child’s treatment. If possible, set up a personal meeting with this person. This form from the ABTA can help you consolidate this information.
  • Keep copies of everything from the insurance company, particularly authorizations.
  • You may have to file appeals or grievances to obtain the care your child needs. If this happens, the ABTA professionals (800-886-ABTA) can help you with this process. Your doctor may also be able to call the insurance company directly to explain the situation.

Getting a second opinion

You may decide that you’d like a second opinion about your child’s diagnosis or treatment options. In brain tumor cases, this is common practice and sometimes even encouraged by your medical team – many doctors welcome a fresh set of eyes analyzing your child’s case. The professionals treating your child should be helpful in finding other resources for second opinions.

Occasionally, a physician may not be helpful in arranging for a second opinion. If this happens, you can search for referrals on your own. Look for hospitals, doctors or facilities that treat pediatric cases similar to your child’s. You will most likely need to gather and submit information about your child’s records, such as the results from laboratory and pathology tests. The clinic or hospital you choose will let you know what records they require. You are entitled to copies of all records.

At the second-opinion appointment, it can be helpful to take another family member or friend to the appointment to take notes. Then, together with your child’s medical team, you can discuss the various options to make a treatment decision.

Read more about getting a second opinion.

Clinical trials

In addition to getting a second opinion, you may want to investigate whether your child is eligible for a clinical trial. Researchers are continuously testing new drugs, surgical procedures, and methods for managing side effects for qualified brain tumor patients who volunteer to receive a treatment that is otherwise unavailable.

If you are interested in learning more about clinical trials that may be relevant to your child’s case, ask your child’s treatment team. You can also visit TrialConnect®, the American Brain Tumor Association’s clinical trial matching service. You can search for clinical trials that match your child’s age, diagnosis and treatment history, as well as be connected with the doctors who are conducting the trials. You can then share this information with your child’s doctor.

Managing hospital stays

Once your child’s treatment has been decided, it will most likely involve a hospital stay. How long your child is in the hospital will depend the tumor type and treatment. You may have one hospital stay, or multiple stays.

Before you go

As with all communications during this time, it is important be honest with your child and their siblings about what will happen at the hospital. Educate yourself first about what your child may experience by talking to the healthcare team. In particular, the social worker assigned to your case will be able to let you know what to expect as well as help you come up with age-appropriate language to prepare your children for upcoming procedures.

For younger children, directed play is an excellent way to teach as well as provide an outlet for expressing any fears. Drawing pictures of the approaching hospital visit, or playing with a doll that also “has a brain tumor” can help increase understanding and reduce a child’s anxiety.

For older children, books or videos may be available and recommended by the hospital staff. Read more about how to talk with children about brain tumors.

In the hospital

The bright lights, hospital equipment and machines in the hospital may be scary to a child and disquieting for teens and adults. Below are some tips, taken from the Children’s Brain Tumor Foundation’s Pediatric Resource Guide.

Hospital resources:

  • Visiting hours may be flexible for parents – be sure to ask.
  • Ask whether the hospital provides accommodations for parents staying overnight. Some hospitals provide items like rollaway beds, toiletries, bathing and laundry facilities, meals, and refrigerator space. Storing some favorite foods and snacks can make the hospital seem more like home.
  • Assist your child with basic care tasks like toileting, bathing and eating. However, occasionally the hospital staff may need to help you, or you may need to step aside for the staff to do their jobs.
  • Typically, there are many resources available for children in the hospital, including specialists and facilities, like playrooms or a library, which can ease the difficulty of a hospital stay. Playrooms can provide an opportunity for children to forget about their illness for a while.
  • Specialists, such as social workers or child-life specialists can help explain procedures or aspects of the illness to your child. Sometimes this can include letting children play with non-dangerous medical equipment and “practice” procedures on dolls or family members.
  • Other services, such as yoga, massage therapy, meditation or music therapy may be available for parents as well as the child. All of these services can be helpful in relieving stress and promoting wellness. If you are interested, ask what complementary services are available.
  • For children who are confined to bed, toys and games may be available to bring bedside. In addition, there may also be volunteers available for reading, playing or just talking.

In addition to all the resources offered in the hospital, there are many ways you can help “normalize” the experience as much as possible.

  • See if your child can wear his or her own clothes as much as possible. Laundry facilities may be available, and labeling clothing can help them from getting lost.
  • Items from your house can make the hospital seem more homelike. Things like stuffed animals, pillows, blankets, or a familiar bedside clock can help.
  • Keeping in touch with classmates can help the child feel more normal. Encourage visits, calls and emails. It may be possible to arrange a video chat with the child’s class at school, or with individual friends. If you travel for treatment, connecting with friends may be even more vital.
  • A laptop, iPod or other electronics can help your child listen to music, watch movies, or play games with friends online.
  • Stick to routines when possible. One family continued a nighttime routine of reading before bed, and then dimming the lights to talk softly before bed.

Coming home after the hospital

Typically, when your child is ready to leave the hospital, he or she may begin further treatment, such as radiation or chemotherapy, or continue to follow up with the professionals at the hospitals to track progress. Either way, the transition from hospital to home can be a stressful time. You may be worried about how to care for your child on your own, or what other resources you may need.

Getting your home ready

Safety at Home has advice for modifying your home, if needed. Your child may have short- or long-term side effects that could affect movement, making it important to create a safe home environment.

In addition, Getting the Help You Need provides you with concrete ideas about how to organize and make the best use of assistance, whether from friends or from outside professionals.

Treatment and Rehabilitation

Again, depending on your child’s individual circumstances, you may be assigned to a clinic or hospital for follow-up treatment. This treatment may consist of chemotherapy, radiation, as well as multiple other services. In addition to the professionals listed in Navigating the Health System, such as neuro-radiologists and rehabilitation specialists, you may also come into contact with many others who have special training with brain function and cancer as they relate to child development.

Your primary team
  • Your child’s post-surgery treatment may be overseen by a >pediatric neuro-oncologist. These pediatricians specialize in the diagnosis and treatment of children with brain and spinal cancers and have particular knowledge of child development. Their knowledge is critical to providing you with important information about potential side effects and referring you to other specialists as needed.
  • In addition to meeting with the pediatric neuro-oncologist, you may also meet with a pediatric oncology nurse practitioner, specialist or physician’s assistant. These health care team members are often a valuable resource for caregivers as they often have more time to answer questions and explain treatments.
  • A pediatric oncology social worker may be assigned to your child’s case by the hospital or clinic, and if so, be sure to take advantage of this resource. This individual has a background in helping families cope with the emotional and physical well-being of children with brain tumors. They can be of great assistance in providing both emotional and practical support, helping you navigate your way through issues from doctor referrals to insurance issues.
Specialists
  • Pediatric neurologists are specially trained in detecting issues pertaining to children’s motor abilities and brain function, and may refer you to other specialists for further testing or rehabilitation.
  • As with adult patients, your child may see an endocrinologist or neuro-endocrinologist. Based on the type of brain tumor and treatment, it is possible that the endocrine glands may be damaged. This is important to monitor, as the hormones secreted by these glands control metabolism, growth, and sexual development. This specialist will be able to monitor the possible effects of the tumor and treatment on these glands.
  • If it is not offered to you, you may want to advocate for a screening by a pediatric neuropsychologist before chemotherapy or radiation to provide the doctor with a baseline. During and after treatment – especially because long-term effects can appear months or years after treatment has ended – this specialist can assess whether the tumor or treatment has caused short- or long-term problems with learning or behavior and help put together a plan to address deficits. The results of these tests can be used to help develop an individualized education plan (IEP) or 504 plan when your child returns to school.
  • Pediatric psychologists help children deal with the emotional and behavioral issues that may affect the child due to illness and treatment. During or after treatment, children may have feelings of grief and depression, or they may have eating, sleeping or social adjustment problems. Although there is sometimes a stigma attached to seeking help for psychological issues, these issues are real symptoms of a brain tumor and treatment. Parents should not hesitate to mention them to their doctor and ask for help.

Post-treatment

Survivors of childhood brain tumors will need to deal with ongoing medical monitoring and assessments post-treatment. One family created a one-sheet guide detailing the child’s health history and treatment to share with any new healthcare or education professionals for whom the information would be useful.

Post-treatment, many children will continue to deal with the effects of the brain tumor. Read more about going back to school after a brain tumor.