What's the Process?
The Process Works in these Phases:
- Consultation process - this may take the place in person or via a phone consultation. This will depend on how involved your oncologist can get in the process. This stage determines if your child's case is appropriate for proton treatment.
- Approval Process - this is the process of gathering all the necessary items needed (see list of items needed tab), and gaining insurance approval. Once you are approved, your child will be set up for simulation.
- Simulation is the process where they make the apertures (cooper piece that controls beam’s area) and compensators (a thick plastic piece that controls the depth of the beam.) The simulation appointment will typically be your first appointment and will take longer than your normal treatment sessions. This is because a new ct scan may be needed and your child will be fitted for the aperture and compensator. Also, they have to determine how to keep your child in exactly the same position so they sometimes make masks for brain tumor cases and other types it may involve other materials. In addition you may notice small marks, or tattoos, will be placed so that the team can align your child properly for each treatment.
- In Between Simulation and Treatment - it can take from 10-14 days to prepare these custom aperature(s) and compensator(s) depending on the complexity of the tumor area to be radiated. Of course, treatment can't begin until these molds are ready. Some proton centers make them inhouse and have control over this process, and some centers outsource the construction.
- Treatment phase - this is when your child begins daily sessions. Usually children receive between 25 - 30 sessions daily Monday through Friday. If your child is under 12, anesthesia may be required which will mean the time needed is around one hour per day. However, depending on other patients and machine issues, your appointment time can vary so always allow enough time. The treatment itself lasts only minutes, but proper positioning is critical to ensuring the tumor site is treated accurately and correctly.
- Graduation Day- many centers have a way of celebrating that last proton session. Some have a gong or a bell to ring. Plan to celebrate, you have come a long way and deserve it!!!
Note - anytime your child will be given anesthesia, you will need to prevent your child from eating or drinking anything by mouth (called NPO) for at least 12 hours prior to the appointment. Centers vary on their rules, and sometimes clear liquids are permitted up to 4 hours prior so be sure to ask if this is not reviewed because they WILL cancel your appointment if the child has had anything prior to anesthesia.
Obviously because your child will be NPO for their daily treatments, you will want to try to have the earliest appointment in the morning so afterward, your child can eat. We recommend taking a thermos and a light snack so when the child wakes up after treatment, they will have a favorite drink waiting for them.