A Lego patient lies on a Lego treatment table while a Lego technician oversees the treatment in a tiny Lego treatment lab.
LEGO® sculpture created by Declan, Spring 2019

Preparing for Your Child's New Patient Visit

What is proton radiation?

Proton radiation is unique in that it can be customized to maximize the radiation dose to the tumor while minimizing the dose to normal structures. For that reason, it is especially advantageous for treating pediatric patients by targeting the tumor while minimizing radiation to nearby growing healthy tissue. Read more about the science of proton radiation therapy. In certain cases, the pediatric radiation oncologist may decide that photon radiation is more advantageous for your child’s treatment.

Where will we stay when we come for our initial new patient visits?

For information about short-term accommodations (one week or less), please visit our overnight accommodations list. Some common short-term housing options include MGH Beacon House & Annex, Hospitality Homes, and nearby hotels, all of which are listed on the overnight accommodations list.

For further assistance, please contact the Mass General Oncology Resource Specialist at (617) 724-0295.

What should we expect to happen on our first visit to the Proton Therapy Center?

You and your child will meet the pediatric radiation oncologist and other members of the treating team, such as our radiation oncology fellow/resident, a pediatric oncologist, a pediatric nurse, our pediatric neurologist, and our social worker and child life specialist. Your child will also have a CT simulation for radiation planning to design accurate radiation treatments, and other appointments for lab, radiology, or supportive services to help us comprehensively care for your child.

Here is a sample new patient schedule:

Monday:

12:00 noon: MRI brain

Tuesday:

1:00 pm: Consult with radiation oncologist and resident/fellow. Meet one of our pediatric nurses.

2:30 pm: Meet the social worker and child life specialist.

3:30 pm: Consult with pediatric oncologist.

Wednesday:

10:00 am: Fitting for mask; CT simulation for radiation planning.

7-10 Days Later: Start proton radiation treatments.

Prior to coming to Mass General, you will receive a schedule of appointments from the Pediatric Proton Coordinator with details of these appointments, plus instructions and your team's contact info. If you have any questions upon receiving the schedule, please call (617) 724-1836.

What should we bring on our first visit to Mass General?

  • Please bring the following to your new patient consultations:
  • CDs of any new scans performed outside Mass General
  • Central line documentation (i.e., port-a-cath card)
  • List of current medications/allergies
  • Recommended: additional caregiver to supervise patient/siblings

What is a CT simulation?

To develop the treatment plan, the medical team will schedule your child for a CT simulation. This is a “rehearsal” for radiation treatment that is performed with a CT scan. Some scans require contrast to make certain organs more visible.

During the CT simulation, the patient is asked to lay down on the treatment table.  The radiation therapists then make small adjustments to straighten your child’s body. Depending upon the location of the treatment, a mask or mold may be made during the CT simulation. This exact position will be reproduced daily during radiation treatment to ensure accurate and precise delivery of proton therapy.  

Also, the radiation therapists may mark your child’s skin. These marks are small ink dots placed superficially under the skin. They will allow the radiation therapists to correctly position your child for each treatment.

Following the CT simulation, your radiation oncologist works with physicists to develop the treatment plan and any equipment needed for the radiation treatment to begin.  This entire process takes about 10 days and we schedule the radiation start date accordingly.

Is chemotherapy available at Mass General?

Yes.  If your child will need either inpatient or outpatient chemotherapy, please let our coordinator know, so that we can schedule your child to see a pediatric oncologist during the first visit to Mass General.

How can I talk with my child about their tumor and/or proton radiation?

Many families have questions about how to talk about radiation treatment with their child receiving treatment, as well as with siblings. It's important to be honest and talk with children in a way that is appropriate for their age and developmental stage. In doing this, children can lead the conversation and ask questions they feel they need answered. If you do not know the answer to a question, that is OK. You can offer to make a list of questions with your child that you can ask the care team together.

The social worker and child life specialist will meet with your family throughout treatment.  They can provide tips on language to use when talking with your children about diagnosis and treatment.

Additionally, we have a book written by a former social worker in the Proton Center that is available to families. This book uses both pictures and text to tell the story of Proton Radiation.

Preparing for Treatment

How can I arrange for my child to receive tutoring services while on treatment?

Students from anywhere in the United States who are unable to attend school for medical reasons are eligible for Home and Hospital Tutoring services. We refer families to a community agency called Signet Education, LLC for academic support while a child is undergoing radiation treatment.

Contact Information:

Signet Education, LLC
1132 Massachusetts Avenue
Cambridge, MA 02138

Contact name: Rachel
Email: tutor@signeteducation.com
Phone: 617-714-5262

Families are asked to contact Signet Education, LLC directly to initiate services. We also ask a legal guardian to sign a written consent form for the Mass General medical team to be able to provide necessary medical/treatment information to Signet Education, LLC to facilitate access to their services.

Families can access information about Signet Education, LLC’s medical tutoring services at the following site: https://signeteducation.com/medical Parents/caregivers are asked to complete both online forms: (1) General Information Form; and (2) Release Waiver.

What should we bring to Boston with us when we relocate for our child’s radiation treatments? Also, can I bring my other children?

Please bring the following:

  • Extended supply of medications
  • Feeding tube supplies (including extra tube)
You are welcome to bring your other children to Boston. Please be aware that if your child receiving treatment will be getting anesthesia, you will need a second adult to accompany your other children (or another child care plan). We are not able to accommodate siblings in the recovery room. Please reach out to the medical team with any questions or concerns.