After you schedule a first appointment with the Proton Therapy Center, our team will begin coordinating everything to ensure that the visit goes smoothly and efficiently. A referral coordinator will begin collecting medical records, imaging studies and past test results. The referral coordinator will share this information with the radiation oncologist and communicate with your child’s medical oncologist. The goal is to make sure that everyone who is caring for your child is working together to provide the most effective, well-coordinated cancer treatment possible, with the minimum number of visits to the hospital for testing, treatment and follow-up.

Your child’s first appointment at the Proton Therapy Center may take up to two hours. This will include time with:

• A nurse, who will perform a physical exam, talk to you about your child’s medical history and answer any questions you have.
• The radiation oncologist, who will examine your child, talk to you about proton therapy, explain what the treatment process will be like from start to finish, and answer your questions.
• The nurse coordinator, who will answer any remaining questions you have and discuss next steps.

You and your child also will take a tour of the Proton Therapy Center and meet the child life specialist. She is an integral part of the care team, and can:

• Explain proton therapy to your child in terms that are understandable.
• Play games and do fun activities to help your child feel more comfortable.
• Share examples of how other children cope with proton therapy and share tips that may help.
• Talk to you about how your child is doing and ways our team can help improve the experience.
• Connect with other people on the care team to ensure that your child’s unique needs are met.
• Celebrate treatment milestones with your child in fun and memorable ways.

The treatment planning process officially begins during your child’s second appointment at the Proton Therapy Center. This appointment is scheduled about two weeks before your child’s first proton therapy treatment. The appointment typically takes about one hour.

During this visit:

• You will learn more about proton therapy and sign treatment consent forms.
• Your child will undergo a treatment planning computed tomography (CT) scan on the area of the body that will be treated. These scans provide information that helps our team develop a precise plan for administering the radiation. 
• Our team will create customized immobilization devices that will help your child remain still during treatment. The devices can include custom-made head masks and/or body molds.

The Importance of Lying Still
In order for proton therapy to be precise, children must lie completely still during each treatment session. If your child will have difficulty lying still, the care team will discuss the option of giving your child anesthesia before the CT simulation and before every treatment session.

After the CT simulation, our team will create your child’s proton therapy treatment plan. A radiation oncologist, radiation physicist and a specially trained treatment planning professional called a dosimetrist will be involved in this complex process. Treatment planning typically takes one to two weeks.

The team will determine how much radiation is needed, how to target the tumor, how many treatment sessions your child will need, and more. A typical proton therapy treatment plan involves treatment once a day, five days a week for four to six weeks.

When the treatment plan is ready, the radiation therapist will call to schedule your child’s daily treatments. During this conversation, the radiation therapist will provide any special instructions for your child’s first treatment session and answer any questions you have about your child’s treatment.

Children who will not be receiving anesthesia during their proton therapy sessions come back to the center for a “dry run” before treatment begins. The official name for this appointment is “verification simulation,” and it takes about an hour.

During this visit, the radiation therapist will bring your child into the proton therapy treatment room, also referred to as the treatment gantry. The radiation therapist will position your child on the treatment table, using the customized immobilization devices that were created during the CT simulation visit.

Next, the therapist will simulate the process of setting up for a proton therapy treatment session. This will include taking X-rays. During this appointment, the therapist will not deliver any proton radiation. It is just a dry run to help our team make sure that everything is in place for treatment to begin.

If your child is going to receive anesthesia prior to each proton therapy treatment, the verification simulation will occur on the first day of treatment, not at a separate visit.

The child life specialist or radiation therapist will take your child to the treatment area when it is time.

Once in the treatment room, the radiation therapist will position your child on the table using the customized immobilization devices.

When treatment set-up is complete, the radiation therapist will step out of the treatment room to administer the radiation. He or she will see and hear your child via computer monitors and (if your child is awake) be able to communicate via a microphone.

When the treatment session is over, children who did not have anesthesia can leave right away. Those who had anesthesia will spend some time waking up in our anesthesia recovery space.

Your child will see the radiation oncologist at least once a week while receiving proton therapy. These visits takes place after the proton therapy treatment session, and typically take 15-30 minutes. They provide an opportunity for the physician to assess your child, address any side effects and answer questions.

Your child’s radiation oncologist is available outside of scheduled appointments. If you have a question or concern at any time and would like to speak to a physician, simply let the radiation therapist or a nurse know.

Your child’s final proton therapy treatment session is cause for celebration, and our team will mark the occasion in a way that makes your child feel good!

Soon after this last treatment appointment, your child will have follow-up tests to help evaluate the success of the proton therapy. You and your child will then meet with a radiation oncologist or medical oncologist to talk about next steps. We will share this information with your child’s referring physician, if needed.