Childhood Cancer

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Childhood Cancer

Pain management

The goal of pediatric pain management should be to minimize discomfort while performing the procedure. The two methods used to achieve this goal are psychological (using the mind) and pharmacological (using drugs). These two methods can be used together to provide an integrated mind/body approach.

Psychological methods

It is essential to prepare for every procedure, because unexpected stress is more difficult to cope with than anticipated stress. If parents and children understand what is going to happen, where it will happen, who will be there, and what it will feel like, they will be less anxious and better able to cope. Here are some ways to prepare your child:

•  Verbally explain each step in the procedure

•  Meet the person who will perform the procedure, if possible

•  Tour the room where the procedure will take place

•  Let small children use dolls to play-act the procedure

•  Let older children observe a demonstration on a doll

•  Let adolescents watch a video that demonstrates the procedure

•  Encourage discussion and answer all questions

For my daughter, playing about procedures helped release many feelings. Parents can buy medical kits at the store or simply stock their own from clinic castoffs and the pharmacy. We had IV bottles made from empty shampoo containers, complete with tubing and plastic needles. Katy’s younger sister even ran around sometimes with her own pretend port taped onto her chest.

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My daughter (3 years old) took an old stuffed animal to the clinic with her. Having the nurse and doctor perform the procedure first on “bear” helped her immensely.

Children and teens can learn mindfulness-based stress reduction techniques, using thoughtful awareness to help manage anxiety. A psychologist or other specialist who is experienced in mindfulness meditation can teach specific techniques that help children cope with difficult situations. This can be very helpful for your child during and after their cancer treatment. You can ask the psychologist at your treatment center to provide a referral to an experienced practitioner (e.g., psychologist or counselor who has training in mindfulness work), preferably one who is covered by your medical insurance.

Guided imagery is another technique children can learn to help manage pain. It is an active process that helps children feel as if they are actually entering the imagined place. Focusing on pleasant images allows the child to shift attention from the pain. Ask if the hospital has someone to teach your child this very effective technique.

A 17-year-old wrote the following description of using imagery during procedures. It is reprinted with permission from the Free to Be Yourself newsletter of Cancer Services of Allen County, Indiana.

My Special Place

Many people had a special place when they were young—a special place that they still remember. This place could be an area that has a special meaning for them, or a place where they used to go when they wanted to be alone. My special place location is over the rainbow.

I discovered this place when I was 12 years old, during a relaxation session. These sessions were designed to reduce pain and stress brought on by chemotherapy. This was a place that I could visualize in my mind so that I could go there any time that I wanted to—not only for pain, but when I was happy, mad, or sad.

It is surrounded by sand and tall, fanning palm trees. The blue sky is always clear, and the bright sun shines every day. It is usually quiet because I am alone, but often I can hear the sounds of birds flying by.

Every time I come to this place, I like to lie down in the sand. As I lie there, I can feel the gritty sand beneath me. Once in a while I get up and go looking for seashells. I usually find some different shapes and sizes. The ones I like the best are the ones that you can hear the sound of the ocean in. After a while I get up and start to walk around. As I walk, I can feel the breeze going right through me, and I can smell the salt water. It reminds me of being at a beach in Florida. Whenever I start to feel sad or alone or if I am in pain, I usually go jump in the water because it is a soothing place for me. I like to float around in the water because it gives me a refreshing feeling that nobody can hurt me here. I could stay in this place all day because I do not worry about anything while I am here.

To me this place is like a home away from home. It is like heaven because you can do anything you want to do here. Even though this place may seem imaginary or like a fantasy world to some people, it is not to me. I think it is real because it is a place where I can go and be myself.

Distraction can be used successfully with all age groups, but it should never be used as a substitute for preparation. Babies can be distracted by colorful, moving objects. Parents can help distract preschoolers by showing them picture books or videos, telling stories, singing songs, or blowing bubbles. Many youngsters are comforted and distracted from pain by hugging a favorite stuffed animal. School-aged children can watch videos or TV, or listen to music. Some institutions use interactive video games on tablets to help distract older children or teens.

Relaxation, biofeedback, massage, acupuncture, Reiki (Japanese energy healing), and accupressure are all also used successfully to manage pain. Ask the hospital’s child life specialist, psychologist, or nurse to discuss and practice different methods of pain management with you and your child.

Pharmacological methods

Most pediatric oncology clinics sedate or anesthetize children for procedures that are painful or that require them to lie completely still. If your clinic does not offer this option, strongly advocate for it. Sedation and anesthesia have the advantage of calming children, reducing pain, and, in many cases, removing all memory of the procedure.

Three types of drugs are used for pain management during procedures:

•  Sedatives, which depress the central nervous system and result in relaxation. The child or teen may fall asleep, but will remain conscious.

•  General anesthetics, which induce a loss of consciousness to prevent the child or teen from experiencing pain or remembering a procedure.

•  Local anesthetics, which temporarily interrupt nerve transmission at a specific site on the body to lessen pain.

Sedatives and general anesthetics

Sedatives and general anesthetics are given intravenously in the operating room (OR) or in a preoperating area or clinic sedation room. Certain drugs must be administered by an anesthesiologist (a doctor specializing in anesthesia) in a hospital setting. Drugs commonly used during procedures include:

•  Valium®(diazepam) or Versed®(midazolam), plus morphine or fentanyl. Valium® and Versed® are sedatives that are used with pain relievers such as morphine or fentanyl. These drugs can be given in the clinic, but the possibility of slowed breathing requires expert monitoring and the availability of emergency equipment. The combination of a sedative and a pain reliever will result in your child being awake but sedated. Your child may move or cry, but he will not remember the procedure. Often, EMLA® or lidocaine are also used to ensure the procedure is pain-free.

My son was treated from ages 14 to 17. During his spinal taps he would get Versed® once he was positioned on the table. I would always sit at his head and keep his shoulders forward while his head rested on my arm. (Kind of a hug.) As the Versed® took effect, he would look up at me with huge eyes and give me a grin a mile wide, then he would say something off the wall. He had to spend an hour flat after the spinal tap. He’d be groggy the whole time, constantly asking me what time it was and how soon we could leave. He’d forget he asked and ask me again 5 minutes later. This continued for the whole hour. Later, we’d laugh about it. He never remembered anything from the spinal taps.

•  Propofol. Propofol is a general anesthetic that will cause your child to lose consciousness. It must be administered in a hospital by an anesthesiologist. It is given intravenously and has the benefit of acting almost immediately with little recovery time. At low doses, propofol prevents memory of the procedure but may not relieve all the pain, so it is often used with EMLA® or lidocaine.

Patrick (12 years old) hates the lack of control involved when having a procedure and getting propofol. He attempts to regain some control by verbally explaining to the doctors just exactly how he wants it done each time. He has his own little routine—tells them jokes, sings “I Want to Be Sedated” (you know, the Ramones song), etc. Patrick’s biggest problem is the taste from the propofol. We have tried so many different things when he wakes up to mask the taste—Skittles®, gum, Gatorade®. We now have a supply of Atomic Fireballs®. I give him one as soon as they bring him out, and he says that really helps cover the taste.

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Let’s face it, kids don’t care about lab work or protocols, they just want to know if they are going to be hurt again. I think that one of our most important jobs is to advocate, strongly if necessary, for adequate pain control. If the dose doesn’t work and the doctor just shrugs her shoulders, say you want a different dosage or drug used. If you encounter resistance, ask that an anesthesiologist be consulted. Remember that good pain control and/or amnesia will make a big difference in your child’s state of mind during and after treatment.

Emotions may run high after a difficult procedure. Instead of immediately having a discussion about what went wrong, schedule an appointment with the doctor well in advance of the next scheduled procedure to explain your concerns and problem-solve.

Because treatment for solid tumors may take months or years, some children build up a tolerance for sedatives and pain relievers. Over time, doses may need to be increased or drugs may need to be changed. If your child remembers the procedure, advocate for a change in the drugs or dosage. It is reasonable to request the services of an anesthesiologist to ensure the best outcome for your child.

A new anesthesiologist suggested nitrous oxide before general anesthesia for my young daughter’s MRIs. Life around MRIs has never been the same. She is actually excited about scans now as if it is some kind of holiday! The first time with laughing gas she started to go “Wheeeee!!!!” I asked her if she was feeling like she was on a roller coaster, and she said, “No, I feel like I’m on the TILT-A-WHIRL!” The next day she said, “Mommy, I don’t want to go to school today, I want to have ANOTHER SCAN!” I can’t say I share her anticipation of a scan, but I am thankful for a good attitude and experience.

Your child will not be allowed to eat or drink for several hours before procedures that require sedation or anesthesia. After a procedure, your child may eat or drink when she is alert and able to swallow.

Local anesthetics

There are several types of local anesthetics used to prevent discomfort or pain during procedures.

•  EMLA®. This anesthetic cream, which contains lidocaine and prilocaine, is put on the skin 1 to 2 hours before a painful procedure. It is held in place on the skin by an adhesive patch or sticky cling wrap.

•  Synera®. This anesthetic patch contains lidocaine and tetracaine and is placed on the skin 20 to 30 minutes before a needle poke or other painful procedure for children age 3 or older.

•  Ethyl chloride spray. This anesthetic spray can be used immediately before a procedure to anesthetize the surface of the skin.

For more information about these local anesthetics, see the section called “Topical anesthetics to prevent pain” in Chapter 15, Chemotherapy.

Danica was age 5 at diagnosis and she learned quickly how to be comfortable with getting her port accessed. She would pop into the chair, pull up her shirt, and be ready to go. The first time her port was accessed, it was still bruised from the insertion of the port, and they didn’t tell me to put the EMLA® patch on it an hour before. That really hurt. After we learned about EMLA®, she did fine and would even remind me to put it on her.

There is also a non-drug option called Buzzy® that parents can purchase without a prescription. It is popular for children who either don’t like or have an allergy to topical anesthetics. Buzzy® uses cold and vibration to block the pain of needle pokes. Parents can carry the cute bee-shaped plastic Buzzy® with them and use it for 30 to 60 seconds to numb the area before a shot, blood draw, or port access is done.

Working with the team

There are many types of drugs and several methods used to administer them. Sometimes 10 minutes of mild sedation is all your child needs; for other procedures, the best option might be full general anesthesia in the operating room. Talk to your oncologist and anesthesiologist about the options and note that it may take some experimentation to determine which techniques and medications work best for your child.

Some treatment centers have a rotating team of anesthesiologists, so you may be working with several different doctors who provide anesthesia or sedation to your child. You can request that the anesthesiologist assigned to your child be experienced in dealing with children and able to communicate well with them.

Holden at age 2 had to be under anesthesia for radiotherapy every day. It was hard because the anesthesiologists didn’t always have a good bedside manner, and we got a different one pretty much every time over 28 treatments. They had a new computer system and they were always having trouble finding the notes from the last sedation. Some of them wouldn’t listen to me about what would work best for him, so it often took longer than it should. When he was stressed he screamed, and I had a lot of anxiety.

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Joseph (age 5) had a good experience with the anesthesiologists who came to sedate him before each of his 6 weeks of daily radiation treatments. They were kind and gentle, and explained each step of what would happen. They kept good records so once we figured out the medications and dosages that would allow him to go down and come back up quickly and cheerfully, they made sure to do that each day. It could have been a scary experience, but they smiled at him, encouraged him, and told him he was a champ. He was always happy to see them even when he felt pretty crummy.

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