CHAPTER 3 Coping with Procedures

Mommy, I didn’t cry but my eyes got bright.
—Four-year-old with ALL
THE PURPOSE OF THIS CHAPTER IS TO PREPARE both child and parent for several common
procedures by providing detailed descriptions of each. Since almost all procedures are
repeated frequently during the long treatment for childhood leukemia, it is important
to establish a routine that is comfortable for you and your child. The procedure itself
may cause discomfort, but a well-prepared, calm child fares far better than a fright-
ened one.
Planning for procedures
Procedures are needed to make diagnoses, check for spread of disease, give treat-
ment, and monitor response to treatment. Interventions range from figuring out the
best way for your child to take numerous pills to having multiple spinal taps. Some
procedures are pain-free, and the family merely needs clear explanations about what
to expect. Other procedures can cause both physical and psychological distress. These
reactions can be avoided or minimized by preparation, appropriate medications, and
good coping skills.
A family-centered approach works best when planning and implementing proce-
dures. The procedures are often as frightening, or more frightening, for parents as for
children. Memories of them can be long lasting. For this reason, children, parents,
and staff should work together to plan for and cope with procedures.
As soon as possible after your child’s diagnosis, find out if the hospital has a child life
program or other team (nurses, psychologists, social workers) that helps prepare
families for procedures. The American Academy of Pediatrics issued a policy state-
ment calling child life programs the standard of care for hospitalized children. You
can find the policy at http://www.aap.org/policy/re9922.html.
The purpose of these programs is to minimize psychological trauma, promote optimal
development, and to maintain, as much as possible, normal living patterns during
hospitalizations. They attempt to minimize the child’s stress by giving him develop-
mentally appropriate explanations of the reasons for procedures and hospital routines.
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 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 healthcare team about the psychosocial
needs of children and their families.
Your response as well as your child’s depends on temperament, age, previous medical
or dental experiences, and other factors. 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. Sometimes, needs change over the years of treatment, so good com-
munication and flexibility are essential.
I started giving my 4-year-old daughter two 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. She was a much happier child after that.
Although it may not always be possible, try to schedule procedures so that the same
person does the same procedure each time. Call ahead to check for unexpected
changes to prevent any surprises. Repetition can provide comfort and reassurance to
children.
Parents can ask for the medical professional with the most experience to perform pro-
cedures, such as spinal taps. In the hospital hierarchy, attending physicians are above
fellows and residents. However, at some large teaching facilities, attending physicians
may not do these procedures very often. Many times, the fellow (and in some states
where it is allowed, the nurse practioner) is more skilled, because they do the vast
majority of these procedures.
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.
Parents should have a choice whether to be present or not during a medical proce-
dure. If your child does better if you are not in the room, ask the child life specialist
or another member of the healthcare team to be present solely to comfort your child.
Your job as a parent during the procedure should be one of support and positive
distraction—not of restraint or inflicting discomfort. The best place to position your-
self is at your child’s head, at eye level and out of the field of the procedure. Speak
calmly and supportively to your child. You can tell stories 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 or a spinal, 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.
Oncology clinics usually have a special box full of toys for children who have had a
procedure. It sometimes helps for the child to have a treat to look forward to after-
ward. Some parents occasionally bring a special gift to sneak into the box for their
child to find.
If given the chance, children have definite opinions about how they like things to go
at the clinic. For instance, Having Leukemia Isn’t So Bad. Of Course It Wouldn’t Be My
First Choice describes a list of rules for clinical personnel written by then 7-year-old
Catherine Krumme in the car on the way to the hospital:
1. Must have a good sense of humor.
2. Must always do a good lumbar puncture (LP) and bone marrow.
3. Must always remember the toy box.
4. Must tell the truth.
5. Must like people.
6. Must like junk food.
7. Must know a lot about chemotherapy.
8. Must not mind the sight of blood.
9. Must like bald heads.
10. Must never be grumpy.