Help for My Child

Helpful Tips and Questions to Ask

When your child’s treatment team gives you information about your child’s cancer, you may not remember everything. That is natural. It is a lot of information, and your emotions will get in the way as you try to take it all in. Use these techniques – write (keep a notebook) and ask a friend or family member to attend care meetings to help retain information. Always remember that you are your child’s only advocate and need to be an effective partner with your child’s treatment team. Make sure you know the answers to the following questions:

About the cancer

  • What kind of cancer does my child have?-Be able to pronounce the name of the cancer and know how to spell it.
  • What is the stage and histology of my child’s cancer?
  • What is the survival rate for children with my child’s stage of disease and risk assignment?
  • Is there anything unique about my child’s cancer that makes their prognosis better or worse?
  • How do I get copies of my child’s test results?-Collect copies of all test results (including blood work) and keep them in your notebook.
  • *The Jay’s HOPE office provides a resource center where you can come and checkout books and/or use the internet to research your child’s cancer and treatment options.

About the doctors

  • Which specific doctors at this center will treat my child? Which doctor is primarily responsible for my child’s care?
  • Who will perform my child’s surgeries? Have they performed this particular surgery before?
  • How many patients have your treated with my child’s diagnosis? What were the outcomes?

Before a procedure

A number of procedures may be conducted to better diagnose your child’s cancer, or “stage the disease.” That means that the doctors will try to determine the extent of the disease. Before these procedures begin, ask these questions:

  • Why is this necessary for my child?
  • What will it tell you about his or her condition?
  • Who will perform the test? Where will it be performed?
  • Is there any preparation for the test?
  • May I be with my child during the procedure? If not, will a member of his/her team, such as a child-life specialist, accompany him/her?
  • What, exactly, will occur during the procedure?
  • Are there any risks? If so, what are they?
  • Will my child be awake or asleep? If he/she will be asleep, what anesthesia will be used?
  • Is it likely that my child will feel pain after the procedure? Will there be side effects? If so, what kind of pain control will be used?
  • Is there any follow-up care I must provide if he/she comes home with me?
  • What can I do to prepare my child? Can someone on staff help, such as a child-life specialist?
  • Do you have any written material about the procedure that I may read?

About treatment

  • What are my child’s treatment options?
  • How long is the treatment plan?- Ask for a road map and keep it in your notebook.
  • Keep a list of your child’s medications and know the names, times and doses.
  • How many children have been treated on this protocol?
  • What are the realistic goals of this treatment?
  • How and when will we be able to tell if treatment is working? How often will my child’s response to treatment be evaluated.
  • Has my child’s cancer metastasized? To what extent?
  • What is the difference between a central line and a portacath? What is the best option for my child?
  • If this were your own child, what would you do and why?
  • Could I speak with parents of children who have completed this treatment plan?
  • *Jay’s HOPE can help get you in touch with other cancer families who have had similar experiences.
  • Who should I talk to about my health insurance and payment issues?
  • Can my child continue to go to school? If not, what kind of arrangements can be made for his/her continued education?
  • If he/she can attend school, will I need to make any special arrangements?
  • Our Jay’s HOPE Educational Liaison can help with navigating school issues. She is also available for tutoring. Please contact our office for more details.
  • What kind of short-term and long-term side effects may occur as a result of this therapy?
  • Will my child feel pain? If so, what kind of pain control will be available?
  • If this therapy isn’t successful, what treatment will you attempt next?
  • If the therapy is successful, will my child require follow-up treatment?
  • What kind of long-term follow-up care will my child need after treatment? For how long will my son/daughter need this care?

About home care

  • How do I handle home healthcare?
  • Is my child at special risk for infection?
  • How can I protect my child against infection? – See info on infection control in the home.
  • What should I do if my child has a fever?- Make sure you have a working thermometer at home.
  • Whom do I call if we have an after hours emergency? – keep this information in your notebook.

Meeting your Family’s Needs

The diagnosis of cancer will have an enormous effect on not only your child but on you and your entire family. Your lives will change. But there are ways to help yourself and your family live through the experience. Here are just a few tips to help:

  • It is not unusual for parents to have a physical reaction to their child’s diagnosis – it will pass over time.
  • Don’t forget to take care of yourself with regular meals, some period of time away for physical exercise such as walks, and get enough sleep.
  • *An initial diagnosis will bring many emotions including shock, denial, guilt, anger, fear and helplessness. These feelings will pass, but get help from support groups, your pastor, talking to family members or friends, social workers, or from a professional counselor. Don’t ignore your feelings.
  • Keep communication open with extended family – don’t isolate yourself or your family from other people.
  • Ask for help – meals, household chores, babysitting, driving kids to school or other activities can relieve you of stress.
  • A range of acting-out behavior such as tantrums, or acting-in behavior, like depression, should be expected from an ill child. Help them to develop ways to cope and express their feelings.
  • Talk honestly with your child.
  • Show lots of affection.
  • Let them talk to you about how they feel about their illness.
  • *Encourage your child’s friends to call or visit if possible.
  • Encourage family gatherings so that the ill child and his siblings spend time together.
  • Keep your children’s routine uninterrupted when possible.
  • Be open – explain to your other children about cancer and treatment. Let them accompany you and your child to the doctor, if they want.
  • Listen – to your children’s concerns, to your spouse’s worries, to the child in treatment.
  • Learn to depend on your spouse for support; share in decision making; take turns spending time with your child and in the home chores.
  • Your other children will feel all that you are feeling and more – fear, concern, guilt, abandonment, sadness and anger. Make sure they feel that they can talk to you about how they feel.
  • Seek out age-appropriate books that explain cancer to children; talk to them in simple terms to explain what is happening; let them visit their sibling; and give everyone a job to do so they feel needed.
  • Spend time alone with your kids and show them affection
  • *Connect through Jay’s HOPE social events to meet other cancer families for emotional support. Nothing is more therapeutic than being in a room full of parents, patients and siblings who know exactly what your family is experiencing.

Jay’s HOPE would love to pray with HOPE for and with your family. Please contact us by phone or email with your prayer concerns. (478) 238-6360 or cindy@jayshope.org