Childhood Cancer

Childhood Cancer

What to expect during a radiation treatment

Radiation treatments can be very stressful for both children and parents, but knowledge and preparation can make the entire process much easier. This section describes radiation simulation and the various types of radiation therapy.

Radiation simulation

Matthew had his own calendar outside the radiation treatment room. For every treatment he received, he picked a sticker to place on his calendar. It was a wonderful way to show him how far he had come and how much farther he had to go before he would be finished. Matthew loved rummaging through the sticker box for the perfect addition to his calendar. When the last treatment had been given, he was allowed to remove the calendar from the wall and bring it home as a keepsake. We still have our son’s calendar. It now has a special place in his scrapbook of memories.

Prior to receiving any external beam radiation therapy, measurements and a CT scan are performed to map the precise area to be treated. This preparation for therapy is called the “simulation” or “planning session.” The simulation will take longer than any other appointment—from 30 minutes to 2 hours. Because simulation does not involve any high-energy radiation, parents may be allowed to remain in the treatment room to help and comfort their child. Young or active children require sedation for the simulation.

During simulation, the radiation oncologist and technologist use a specialized x-ray machine or a CT scanner to outline the treatment area. They will adjust the table that the child lies on, the angle of the machine, and the width of the x-ray beam needed to give the exact dosage in the proper place. Ink marks or permanent tattoos are placed on the skin or the immobilization device to ensure accuracy of treatment. After the simulation is completed, the child can leave while the radiation oncologist carefully evaluates the developed x-ray film and measurements to design the treatment field.

External beam radiation treatment

To receive external beam radiation, children are given appointments to visit the radiation clinic for a specific number of days, usually at the same time each day. If a child will have anesthesia for treatment, the sessions are usually scheduled early in the morning, because the child will not be able to eat or drink before coming in for treatments. Older children who require anesthesia may be treated later in the day, such as late afternoon, so they can continue to attend school, if possible. Radiation is given 5 days a week for 2 to 7 weeks (weekends off); the duration of the radiation treatment varies, depending on the type of cancer being treated. At some institutions and for some protocols, children go more than once a day to receive hyperfractionated dosing.

When the parent and child arrive, they must check in at the front desk. The technologist or nurse then comes out to take the child into the treatment room. Often, parents accompany young children into the room. If the child requires anesthesia, it is usually given in the treatment room.

I desperately wanted my 4 year old to be able to receive the radiation without anesthesia. I asked the center staff what I could do to make her comfortable. They said, “Anything, as long as you leave the room during the treatment.” So I explained to my daughter that we had to find ways for her to hold very still for a short time. I said, “It’s such a short time, that if I played your Snow White tape, the treatment would be over before Snow White met the dwarves.” Katy agreed that was a short time, and asked that I bring the tape for her to listen to. She also wanted a sticker (a different one every day) stuck on the machine for her to look at. I brought her pink blanket to wrap her in because the table was hard and the room cold. Each day, she chose a different comfort animal or doll to hold during treatment. So we’d arrive every day with tapes, blanket, stickers, and animals. She felt safe, and all treatments went extremely well.

The technologist will secure children or teens in place with an immobilization device. Measurements are taken to verify that the child’s body is perfectly positioned. Frequently, the technologist will shine a light on the area to be irradiated to ensure that the machine is properly aligned. The technologist and parents leave the room, closing the door behind them.

At some institutions, parents are allowed to stay and watch the TV monitor and talk to their child via the speaker system. If this is the case, the parent should be careful not to distract the technologist as he administers the radiation. At other institutions, parents are asked to wait in the waiting room. It’s important that parents understand the department’s policies; they should ask the radiation therapist if anything is unclear.

The treatment takes only a few minutes and can be stopped at any time if the child experiences any difficulty. When the treatment is finished, the technologist turns off the machine, removes the immobilization device, and the parents and child can go home. If the child received anesthesia, she will need to recover from the anesthesia before she can go home. There is no pain at all when receiving external beam radiation treatment, but some children report seeing flashing lights or noticing a burning smell. Both of these are normal experiences, but it is important to let the radiation oncologist know if your child mentions either of them.

There was something about the radiation or the anesthesia that frightened Shawn terribly. He would scream in the car all the way to the hospital. It was a scream as if he was in pain. He had nightmares while he was undergoing radiation and every night after it was over. We decided a month after radiation ended to bring a box of candy to the staff who had been so nice. Shawn asked, “Do I have to go in that room?” When I explained that it was over and he didn’t need to go in the room anymore, he asked if he could go in to look at it once more. He stood for a long time and just looked and looked at the equipment. Somehow he made his peace with it, because he never had any more nightmares.

Because external beam radiation therapy is usually given at short, daily appointments for several weeks, families who do not live within an hour or so of their treatment center often have to arrange to stay near the hospital. Your social worker can help you arrange to stay at a Ronald McDonald House or other similar facility, at a hotel, or at a short-stay apartment near the hospital. If the hospital you will go to for radiation is different than your child’s regular hospital, your oncologist will work closely with an oncologist from the radiation center who will make sure she receives any blood tests, chemotherapy, or other care that is required during that time.

Internal radiation treatment

Charlie was diagnosed with rhabdomyosarcoma of the prostate at 16 months old. The radiation oncologist at our hospital in Pennsylvania referred him for proton radiation, and they sent us to Boston. I was terrified of the whole prospect. Our older son was in school and I had put him to bed every night of his life, and I would have to leave him. My husband still had to work. It ended up being just a wonderful experience. My mom came with us to Boston. She cooked and did laundry and cared for me while I cared for Charlie. We had never been to Boston and we loved it. We go every year because it’s a celebration and he is enrolled in a study so he has to go back for 5 years. We rented an apartment right across the street from the hospital from a list provided by the social worker. We would go downstairs, go across the street, and get his treatment. He had no hesitation. He would sit in the crib and say “Whee!” as we went down the hall. He was sedated for every treatment. He fell asleep in my arms, and I would walk out of the room. After Charlie woke up from anesthesia, we had the rest of the day to do whatever we wanted. He had no radiation burns, and one day of diarrhea. He had no black skin, no problems at all.

Internal radiation therapy, also called brachytherapy or seed implantation, involves the placement of radioactive materials inside the affected area. This form of therapy delivers a high dose of radiation directly to the cancerous area. Children are admitted to the hospital to receive internal radiation. A catheter is inserted into the child in the radiology department or in the operating room, and radioactive materials are placed via the catheter.

The child is then transported to a hospital room specially designed for children undergoing this type of treatment. The walls may contain lead (to keep the radiation in the room), and often items such as sheets and eating utensils are disposable. The child will remain there until he is no longer radioactive. The radioactive materials, also called interstitial implants, will generally remain in place for several days. Once they are removed, your child may resume normal activities and will no longer require isolation.

Children and pregnant women cannot visit while a child is receiving internal radiation. Parents and nursing staff can spend a limited amount of time in the child’s room. This may be distressing for very small children who are unable to understand why people must maintain a safe distance. It may be possible to keep the door to your child’s hospital room open. In these instances, you can sit in the hall and talk to your child to help alleviate fears or boredom. You can ask the nursing staff and the child life specialist if they have suggestions about how to make your child as comfortable as possible.

Our son was 5 years old when he was admitted for his internal radiation. The biggest issue we had to deal with was boredom. It was hard for him to understand that I wasn’t allowed to spend all my time at his bedside. The door to his room was open at all times, so I moved a reclining chair into the hall, and that was where I stayed for 4 days. I would read him stories, stopping from time to time to hold up the book so he could see the pictures. He had computer games and a DVD player in his room, and that helped to keep him entertained.