Child Cancer Diagnosis - What Next?
When Your Child Has Cancer
The most common types of childhood cancer are brain cancer (such as brain stem glioma and tumors), leukemia, osteosarcoma and lymphoma, affecting about 14 out of 100,000 children in the United States. When your child has cancer, what should you do? Below you'll find some tips and helpful information on what you need to know and how to cope.
You Are Your Child's Advocate
If a child is diagnosed with cancer, it's a devastating blow that affects the entire family, bringing normal life to a halt. As a parent, you need to make informed decisions about your child's care. Unforeseen difficulties are certain to crop up, adding to your stress. Anticipating and adopting strategies for dealing with potential issues can help you avoid a lot of tension as well as have a beneficial effect on your child's recovery.
Here are some of the issues you might face, and what you can do:
Second Opinion: When your child receives a cancer diagnosis from the pediatrician, it's normal and natural to respond with shock and denial. Some of the symptoms of childhood cancer such as fever, swollen glands, anemia, bruises and frequent infections are also associated with conditions that are not cancer. You may refuse to believe the initial diagnosis and want to get a second opinion. That's your right. However, be aware that delay puts your child at risk of a less than optimal response to treatment. In general, the sooner cancer treatment begins, the more effectively the treatment is. Don't delay too long.
The Treatment Team: At the hospital or childhood cancer (pediatric oncology) center, you will meet the members of your child's treatment team. The team can include a pediatric oncologist-a specialist in childhood cancer-assigned to oversee your child's treatment, as well as pediatric oncology nurses; nurse practitioners; physician's assistant; registered dietician or nutritionist; play therapist, psychologist, social worker, and school re-entry specialist for school-age children. Other members of the team may include (depending on the type of cancer and the treatment required-radiation, chemotherapy or surgery, or a combination ) a pediatric surgeon, radiologist, radiation oncologist and/or pain specialist.
Take Notes: Whenever you speak to a doctor or health care professional about your child's prognosis and treatment, take notes. If you don't trust yourself to concentrate, bring a friend or family member with you to appointments. Don't be afraid to ask questions or ask for clarification if something isn't clear. You must assume an active role in your child's care by learning everything you can so you can make informed decisions.
Medical Records: Ask for and be sure to get copies of your child's medical records, and keep them updated. In accordance with state and federal law, you are entitled to these documents, so don't allow yourself to be put off. You may have to make your request in writing via Registered Mail or fill out a form provided by the hospital or doctor's office. Bring the updated records with you whenever your child has an appointment or procedure scheduled. This will ensure few to no errors or mix-ups in medications or treatment.
Clinical Trials: Before you make any decision about your child's participation in a clinical trial, discuss the risks and benefits with your child's treatment team. The
National Cancer Institute has a great deal of information regarding clinical trials and how to find out about programs in your area.
More information below!
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Money & Other Matters
INSURANCE AND FINANCES
What You Need to Know: Your family's financial situation may change due to expenses associated with your child's care such as traveling to and from the treatment center, insurance co-payments and deductibles, medications and procedures not covered by your plan, out-of-network costs, any costs that exceed the insurance plan's lifetime maximum, as well as loss of income due to a parent taking a leave of absence from their job. The social worker on your child's treatment team can answer questions about financial assistance and help you find the right program for your needs, but it never hurts to do your own research into the possibilities. More information can be found on the following websites:
OTHER THINGS TO CONSIDER
Schoolwork: Many hospitals and treatment centers have teachers and education coordinators especially trained to help pediatric cancer patients continue their studies and complete schoolwork while undergoing treatment. Don't forget to find out if your child's school offers tutoring sessions or a special transition program to help ease them back into the regular class schedule.
Support Services: You'll find support groups for your family at most hospitals and treatment centers. You may also benefit from other groups and programs, whether on-line or in your area. Ped-Onc Resource Center has a list of organizations and interest groups as well as other helpful information.
Visits aren't always welcome when your child feels sick, and it can be difficult for them to muster the energy to talk on the phone, but it's important for your child not to feel isolated and alone. You can encourage schoolmates, friends and family to send greeting cards as a way of keeping in touch.
Artist Corrie Kuipers has designed a collection of greeting cards created especially for children, pre-teens (tweens), teenagers and young adults undergoing cancer treatment. The vibrant colors and cheerful artwork, coupled with positive messages of encouragement and support, will bring sunshine into your child's day. Here are samples of the kind of cards you can find.
Kids & Teens & Cancer
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