Childhood Cancer

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Childhood Brain and Spinal Cord Tumors

Planning for procedures

Procedures are needed to make diagnoses, check for spread of disease, give treatments, and monitor responses to treatment. Some procedures are pain-free and easy to tolerate once both the parent and child know what to expect. Other procedures can cause both physical and psychological distress in the child, which can be amplified if the child sees that the parent is also traumatized. The best way to prepare the child is for parents to prepare themselves, intellectually and emotionally, to provide the support and comfort their child will need to endure the upcoming procedures. In most cases, although the procedure itself is non-negotiable, options are available to lessen the pain or stress. Parents need to know what these choices are to be effective advocates for their children.

A family-centered approach works best when planning and implementing procedures. The procedures are often as frightening, or more so, for parents than for children. Because memories of the procedures can be long lasting, children, parents, and staff should work together to plan for and cope with procedures.

Many hospitals have a child life program. These programs exist to minimize psychological trauma and maintain, as much as possible, normal living patterns for hospitalized children. The American Academy of Pediatrics considers child life programs the standard of care for hospitalized children. As soon as possible after admission, find out whether your hospital has a child life program or an equivalent support team.

Matthew was in sixth grade when he was diagnosed, and he was worried about the surgery for implanting the port. He didn’t know what the scar would look like and he was concerned about AIDS, because it had been in the news a lot that year. The child life worker came in and really helped. She showed him what a port looked like; then they explored the pre-op area, the actual surgery room, and post-op. She showed him on a cloth doll exactly where the incision would be and how the scar would look. Then she introduced him to “Fred,” the IV pump. She said that Fred would be going places with him, and that Fred would keep him from getting so many pokes. She told Matthew that he could bring something from home to hang on Fred. Of course, he brought in a really ugly stuffed animal. Throughout treatment, she really helped his fears and my feelings about losing control over my child’s daily life.

Child life specialists or other team members may accompany children to, and provide support during, procedures. They establish relationships with children based on warmth, respect, empathy, and understanding of developmental stages. They also communicate with the other members of the treatment team about the psychosocial needs of children and their families.

One way to help child life specialists do their job is to communicate openly with them from the beginning. In particular, it is helpful to share insights about your child’s temperament and history to help the specialist understand how to approach your child. Discuss with the child life professional or social worker when and how to prepare for upcoming procedures. Usually, parents need to experiment with how much advance notice to give younger children about procedures. Some children do better with several days to prepare, while others worry themselves sick if they are informed too far in advance. Sometimes, needs change over the years of treatment, so good communication and flexibility are essential.

I started giving my 4-year-old daughter 2 days’ notice before procedures. But she began to wake up every day worried that “something bad was going to happen soon.” So we talked it over and decided to look at the calendar together every Sunday to review what would happen that week. We put stickers on “procedure days” so she knew what to expect. She was a much happier child after that.

Although it may not always be possible, try to schedule procedures so the same person does the same procedure each time. Call ahead to check for unexpected changes to prevent any surprises for your child. Repetition can provide comfort and reassurance to children. Ritual can also be important. A child may prefer a precise sequence of steps or the use of certain cue words to signal the start of a procedure. If the staff knows the child and complies with her wishes, the child is usually calmer and more compliant.

Parents can ask for the medical professional with the most experience to perform procedures. The most-experienced person is not always the senior one. Nurses, for example, are often better than doctors at drawing blood. In the case of procedures that must be performed by a doctor, the nurses or technicians usually know which one is best at which procedure. Don’t hesitate to ask.

Parents should have a choice whether or not to be present during a medical procedure. If your child does better when you are not in the room, ask the child life specialist or another member of the treatment team to be present solely to comfort your child. Teens often want to handle the procedure on their own and it is normally best to respect their wishes.

During procedures, a parent’s role is to be supportive and loving. In most cases, the best place to position yourself is at your child’s head, at eye level. Speak calmly and positively to your child. You can tell stories, sing songs, or read a favorite book. It helps to praise your child for good behavior, but don’t reprimand or demean your child if problems occur.

We decided from the very beginning that, even though it’s no fun to have a bone marrow aspiration or a spinal tap, we were going to make something positive out of it. So we made it a party. We’d bring pizza, popcorn, or ice cream to the hospital. We helped Kristin think of the nurses as her friends. We’d celebrate after a procedure by going out to eat at one of the neat little restaurants near the hospital.

Giving children some control over what happens helps tremendously, but only give choices when they truly exist.

Katy and I wrote down her requests for each procedure that first week in the hospital. For example, during spinal taps she wanted me (not a nurse) to hold her in position; she wanted xylocaine to be given with a needle, not with the pneumatic gun; and she had a rigid sequence of songs that I sang.

Oncology clinics usually have a special box full of toys or a selection of rewards for children who have had a procedure. It sometimes helps for the child to have a treat to look forward to afterward. Some parents bring a special gift to sneak into the box for their child to find.

Chapter 6: Coping with ProceduresPain management

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