The hours and days that proceed a cancer diagnosis can seem surreal. Many parents go through denial, anger, guilt and grief, just a plethora of emotions. Sometimes the hospital may immediately send a social worker to help you process this time and help with decisions about what to do next. Other times parents may feel like they have no idea what to do next. Below is a list of a few practical things to do when your child is diagnosed with cancer.
- Ask doctors and nurse practitioners the best way to contact them – most will give you their phone number, pager number, and email. Find out what to do when all the “what ifs…” happen (i.e. what if they run a fever, what if there is an emergency, etc).
- Ask to speak with the hospital social worker. Verbally express what needs and concerns you have. They are there to help your family any way possible.
- Ask to have a child life specialist work with your child and any siblings in regards to upcoming procedures, tests, or treatment. It helps take much of the fear out. Please remember that siblings are battling cancer too, maybe not physically, but emotionally they are part of the journey as well.
- Research the best hospitals/doctors for your child’s cancer type. One reputable website is US News & World Reports (http://health.usnews.com/best-hospitals/pediatric-rankings). You are your child’s number one advocate. Ask other parents about their experiences.
- Ask for literature on what treatments or medicines the doctor will be putting your child on and pay attention to side effects. Ask about long term side effects and what to watch for even after treatment is complete. Some side effects can be avoided by preventative medicines or therapies.
- Get copies of all medical records and keep a notebook with you of all main information – surgeries, operative reports, medicines currently on, medicines taken in the past, allergies and reactions, diagnosis, treatment plans, test results (i.e. MRI scans, CT scans, PET scans, ultrasounds, X-rays, etc., recent lab work, vaccines, list of doctor names, phone numbers, and emails, etc. This is especially important if you do not live near your treatment facility.
- Even if you have insurance, check with your local Department of Social Services and explain your child’s diagnosis. Many times Medicaid will help pay the copays or out of pocket expenses not covered by insurance. Also make sure to talk with the billing department at the hospital to get any sort of financial aid form to help with mounting expenses.
- Set up a support system of people you can contact in an emergency, to help with other children, for prayer, for advice, etc. Allow people to help and give them ways that are helpful for your family. Other family and friends can sometimes feel helpless and they truly want to help so give them ways that are helpful to you. For example, meals, helping with other children, house cleaning, etc.
Remember that you are not alone. There are so many children battling cancer and other parents who are at different stages of the journey. Reach out to them. If you are part of a church, talk to your pastor/priest. Get in the Word of God to find hope and encouragement. Never give up hope.
Nathan’s Hope founders, Bobby and Dawn Norman, are both graduates of Liberty University. Bobby is a Licensed Optician and Dawn is a stay at home mom. They have been married since 1998. The Norman’s have four precious children whom they homeschool: Sarah (born 2003), Matthew (born 2005), Nathan (born 2006) and Tabitha (born 2009). They never imagined themselves with a child battling cancer. Their youngest son, Nathan (born Dec 2006), has been battling brain and spinal cord cancer since Jan 2009 and receives treatment at Duke University in NC. His story can be found at www.caringbridge.org/visit/nathannorman.