Your Child’s Healthcare Team
Remember that your child’s health care team is there to help you and your child cope with the challenges of DIPG. Your family may not encounter any of the challenges listed in this section, or you may experience only some of them. While the health care team tries to anticipate what you and your child might need, not all situations are easy to predict. Don’t hesitate to contact your child's health care team whenever you have questions or concerns.
Know Whom to Call
You have likely met many members of your child's health care team since the time your child was diagnosed with a DIPG. Each person has a special role in caring for your child. Make sure you have the name, phone number, and email contact information for the person on your child's health care team that you should contact for routine questions and concerns. Also, be sure you have the contact information for those you should contact during an emergency, after hours, and on weekends. The American Childhood Cancer Organization provides a free journal entitled Along the Way to assist with this type of record keeping. This journal is available without charge by request to all parents of children with cancer. This journal includes designated pages to include contact information for your child’s healthcare team. Keep the contact information:
- Next to every phone in your house.
- In your cell phone. (If you own an iPhone, there is a helpful “app” called iCANcer, available through iTunes, where you can store all contact information, as well as the diagnosis, treatment, and medical information of your child.)
- In your wallet or purse.
- Near your phone at work (if you have a private office or desk space).
- At your child's school—with your child's teacher and the school nurse and at your other children’s school(s), if applicable.
- With people who care for your child, either at your home or theirs, while you are gone (such as grandparents, daycare, or babysitters).
Your Child's Social Worker
Get to know your child's social worker well. The social worker is there to help you and your child navigate the many feelings and emotions you might experience as you go through the DIPG journey. If you have not been assigned a social worker, call your child's nurse and ask to have a social worker assigned to your family. Medical problems are not the only issue you, your child, and the rest of your family will face. Having a cancer diagnosis is a scary and emotional experience. There will be times when you are sad, times when you are angry, times when you are frustrated, and times when you feel joyful. Your social worker can help you and your family as you deal with these difficult emotions.
Your Child’s Nurse or Nurse Practitioner
In general, social workers cannot answer medical questions about your child's diagnosis and treatment. Thus, your child’s nurse is another important contact on your child's medical team. Your child will likely have a primary nurse (RN) or nurse practitioner (APN) who will take the lead in answering all your medical questions. The role of APNs is similar to the role of doctors; they can serve as a patient’s primary health care provider and prescribe medications, whereas RNs do not. The nurse/nurse practitioner is usually the first person you call with routine questions and concerns. If that person does not know the answer, she or he can readily find your child's doctor. This does NOT mean your child's doctor is not routinely available to you. You may talk with your child’s doctor at most any time, but your child's nurse/nurse practitioner is a great resource for practical information about the day-to-day challenges you may face. Do not hesitate to call the nurse/nurse practitioner if you have questions or concerns. The nurse/nurse practitioner usually serves as a central contact for parents and helps get them to the right person when questions or concerns arise.
Your Child’s Case Manager
Another key person to get to know is the case manager assigned to your child from your health insurance company. If a case manager is not assigned to you, call your insurance company and ask to be assigned one. Tell the insurance company that your child has “a brain tumor with complex health care needs;” this is common terminology you can use to help your insurance company understand why you are asking for a case manager. If your insurance company is not responsive, be persistent.
You will need the following information when you talk with your insurance company. This is information that you can get from your child's nurse/nurse practitioner.
- The diagnosis: diffuse intrinsic pontine glioma (ICD-9 code is 191.7);
- Date of diagnosis;
- The name of all hospitals where your child receives treatment;
- The type of treatments your child is receiving, (e.g., chemotherapy, radiation therapy, physical therapy, occupational therapy);
- The contact information for your child's doctor and nurse/nurse practitioner.
Be willing to give your insurance company permission to contact your child's doctor and/or nurse/nurse practitioner for more information about your child and the care your child will need. The insurance company may have other questions regarding your child's diagnosis. Do not hesitate to ask the insurance representative to contact your child's doctor or nurse/nurse practitioner to get answers to these questions, especially if you do not know the answers or are unsure of the details.
Having a case manager at your insurance company usually allows you to have a central contact person who can help you obtain referrals and approvals for your child’s care. By having one person (your case manager) to call for help with insurance-related issues, you can often avoid the long process of trying to find the right department for needed help. Your case manager may also be able to arrange for someone to help care for your child at home.
Home Care Nurses
Sometimes parents can arrange nursing care in the home for a short while. This is not possible in every situation, but it may be possible for short periods of time. Talk with your child's case manager, social worker, or nurse/nurse practitioner to find out whether or not you are able to have home care nurses come in for short periods to help you, especially when your child first goes home or if your child's symptoms worsen and he/she requires more care at home.