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What Your Child Can Expect During MIBG Treatment

  • What to Expect During MIBG Treatment
    Noah, a boy with neuroblastoma, shares his experience receiving MIBG therapy at Dana-Farber/Boston Children's Cancer and Blood Disorders Center. He describes what to expect throughout the MIBG treatment process.

  • Although it looks like water, MIBG is actually a special medicine that contains radiation. Radiation used for therapy can be provided in two different ways. Typically, a machine delivers it from outside of the patient's body. However, radiation also can be given inside the body through a central line or IV.

    When the radiation in MIBG is inside your child's body, it will find the cancer cells in your child's body and attack those cells. The procedure used to put the MIBG inside your child's body is called an infusion, and it takes less than 2 hours. Once it's done, your child will need to stay in the hospital room for the next few days to control the radiation exposure to others and for monitoring.

    Frequently Asked Questions About MIBG Therapy

    What does the MIBG room look like?

    The MIBG room looks much like any other hospital room, except for a few key differences. There are two connected rooms, a main room and an anteroom. The main room is where your child will stay. Lead is built into the walls to prevent radiation from the treatment from escaping the room. The smaller room (called the anteroom) is for parents and caregivers. Most of the time, the door that connects the rooms will stay closed, but there is a window between the two rooms and a camera so that you are able to see your child in the room. You can spend time in the room with your child when they need you, but we ask that you to stay in the anteroom much of the time to limit your exposure to radiation.

    Many things inside the room are covered in plastic. This limits the spread of any radiation from your child's bodily fluids to the surfaces and equipment in the room. There are also radiation shields next to the bed. These are for you and the staff to stand behind to lower your exposure to the radiation that is inside your child. Toward the end of the hospital stay, the radiation will be low enough and you'll be able to get closer to your child.

    Your child will be provided an assortment of toys and games. Our child life specialists will talk with you and your child and will provide toys and games based on your child's preference.

    Who is allowed to visit with my child?

    If possible, two caregivers should plan to be available to provide much of the care and support for your child during the hospital stay. Only one caregiver is permitted in the room at a time. When entering the room, caregivers wear badges called dosimeters to measure the radiation received when caring for the child. Our staff monitor those levels to ensure that they stay within a safe range. Caregivers should not eat or drink in the room. Caregiver belongings should be kept in the anteroom. A chair bed is provided in the anteroom for one caregiver to stay overnight. Anyone who is pregnant or under age 18 is NOT allowed in the room.

    As a caregiver, what are my responsibilities during and after MIBG treatment?

    As your child's caregiver, you will play an essential role in providing your child's day-to-day care and support, including helping your child with their daily needs, such as feeding your child, brushing your child's teeth, washing, and diaper changing if necessary. Our nurse practitioner and radiation safety staff will work closely with you to prepare for your child's stay, to review the care that you will be expected to provide to your child during and after the hospital stay, and discuss ways to minimize your radiation exposure.

    How will my child feel during MIBG therapy?

    Most children don't feel any side effects from the MIBG therapy. MIBG is usually much easier for children than chemotherapy. While many children become nauseous following chemotherapy, this is almost never the case with MIBG treatment. One common side effect is that your child may develop lower blood counts about 2-3 weeks after the MIBG infusion and may feel more tired. The hardest part of MIBG therapy for most children is the boredom of staying in the MIBG room during the treatment. However, we will provide toys and activities to keep your child busy during this time.

    How long will my child stay in the hospital?

    Your child will remain in the MIBG room for about five to seven days. Immediately after the MIBG infusion on Day 1, your child will have minimal contact with caregivers and hospital staff until their body gets rid of much of the radiation (mostly through passing urine). Over the next few days, the radioactivity level will continue to decrease. After about five to seven days, once the amount of radioactivity drops to a safe level, your child will be ready for discharge. At this point, your child will still have a small amount of radioactivity in the body and for this reason, you and your child will need to go directly home. Once home, you'll need to follow some simple safety precautions, similar to what was practiced in the hospital. Typically, we ask you to follow safety precautions for one more week.

    How will you measure radiation safety and minimize risks?

    All caregivers and staff wear dosimeters so that we can continually measure radiation levels and ensure that caregivers are at safe levels throughout the therapy. Anyone who enters your child's MIBG room will wear disposable gowns, gloves, and shoe coverings. Your child will have a Foley catheter (a thin tube inserted into the bladder to drain urine) placed to limit radiation exposure to your child's bladder. The amount of radiation caregivers receive is typically less than what a person would get from a CT scan.

    Will any personal belongings in the MIBG suite need to be thrown away after treatment?

    When bringing items from home, please make sure that they have a smooth hard surface (like an iPad) and can be easily wiped down and cleaned. Stuffed animals, pillows, clothes and blankets should stay at home. Anything your child is in contact with or contaminates by contact with their bodily fluids will need to be tested for radioactivity. Items that remain radioactive will need to be discarded or kept at the hospital until the item is no longer radioactive. Please do not bring anything valuable or irreplaceable, in case it becomes contaminated.