Patient and Family Support 2016-12-05T10:18:13+00:00

Patient and Family Support

Having a child diagnosed with brain cancer is a devastating event. However, now is the time when efforts should be channeled to obtaining the best care possible for your child.  Going about the many decisions that lay ahead is crucial in securing timely and effective treatment for your child.

Our recommendation is to start this critical decision

  • If possible, adjust your work schedule so you can commit some time to the process of obtaining multiple medical opinions. Seek help from family members and friends who can support your other children and loved ones with meals, transportation and other needs.

  • Get more than one medical opinion, preferable three or four from well known, reputable institutions that deal primarily with pediatric brain cancer. You do not have to visit all these centers physically with your child unless they require it.

  • Contact the physician in charge of Pediatric Oncology at the institution; preferably one who specializes in pediatric brain cancer. It may be helpful to provide the name of the type of tumor your child has so they can pair you with the most appropriate physician. Most reputable institutions have nurses or nurse practitioners who are very helpful in guiding you through the process of obtaining additional physician opinions. Be clear on what they want you to submit and what they will obtain from other institutions. Inquire how to obtain your child’s records as you go along. Records may be obtained through physicians, nurses or the medical records departments.  This may include the following:

    • Actual slides of the tumor itself so that they can run their own tissue pathology.   Do not send the pathology reports from other institutions because you want each center to come up with their own unbiased, independent interpretation.
    • Copies of medical consultations, surgical reports and laboratory reports
    • Copies of CDs of MRI’s, CT/CAT scans, and X-rays.

    This process should be expeditious, so make sure you always retain copies of all of your child’s records, wherever you go. Double-check that all institutions have received all of your child’s records.  Many calls may be needed to complete this process. Keep a chart.  Follow up is crucial. Secure an appointment with the consulting doctor as soon as possible. The nurses or nurse practitioners may have a suggestion or contact person to help you find temporary lodging if traveling.

  • Contact your medical health insurance carrier and ask for a designated case manager to be assigned to your child’s case. A case manager can be your advocate in going through the maze of medical bills and pre-certification processes. Remember, your energies will need to be focused on the medical and emotional state of your child as well as other family members.  The last thing you want to deal with is declined payments to facilities and healthcare providers.

  • You may very well get different opinions about the nature of the tumor and/or the protocol of therapy from different practitioners. One way or the other, you will soon get two or more collaborative opinions. At that point, it depends on your gut feeling where you will be treating your child based on those collaborative opinions.  Make sure the pediatric oncologist is compassionate, friendly and communicates well with you and your child.

  • In some instances, you may decide on a protocol of therapy from one institution that may carry more promise, but for convenience you cannot relocate your family and be there for a prolonged period of time. In this instance, inquire if the center closer to you is able to treat your child using your selected protocol from the more distant institution. This may not be possible since cancer protocols usually have to be approved by the institutional research board prior to implementation.

  • Tend to your own health during this process as well as that of other family members. This includes keeping up with health screenings and refilling prescriptions as needed. Dealing with an illness of a loved one, especially a child, can be very challenging emotionally, mentally and physically. You have to be strong to care for your family as well as your sick child. If you think you are not coping effectively with the situation, be sure to seek help for yourself and your loved ones so you can keep the process moving forward. Most institutions offer support to family members in your situation. Your child’s team of healthcare providers is an excellent source to provide you with contact information for supportive care.

  • Always stay focused, optimistic and hopeful. Believe in the power of positive thinking! Many new treatments are coming out on a continuous basis. We believe that science is on the verge of unraveling the nature of this disease.  Progress has been made, yet research is tedious, labor intensive and costly, and we all need to encourage and fund the medical community to put an end to this malady of our time.  This will necessitate innovation, commitment, and perseverance.   Hopefully, we will find a cure in the near future.