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MIBG therapy delivers more than medicine, it delivers hope to children with neuroblastoma. And because our MIBG facility is the only one in Texas and in the Southwest, we bring care closer to home.
Children receiving MIBG therapy as part of a clinical research trial will stay in a lead-lined room designed to minimize radiation exposure to the family and staff caring for the patient.
I-131 MIBG is a substance that's attached to radioactive iodine. When a child has the MIBG treatment, he or she gets the I-131 MIBG through an IV. The radioactive iodine is carried to the tumor cells by the MIBG and attaches to them. The radiation damages the cancer cells shrinking the tumor.
MIBG is put into the body through the vein (in an IV). The IV infusion of MIBG takes about 90 minutes to two hours and is not painful. The child will stay in the medical center for about five to seven days. Because MIBG is radioactive, it's handled very carefully. It also makes your child radioactive, which means they can't come out of the lead-lined room until the radiation has gone down to safe levels. This may take 3 to 5 days and in rare cases longer.
The MIBG leaves the body mostly through urine that becomes radioactive. Your child will have a bladder catheter so the urine will be disposed in a safe way.
It's a challenge to keep the child busy during this time. The MIBG treatment doesn't make them feel sick, so they should be their normal energetic self. Physical activity will be limited until the bladder catheter is removed. To make it a little easier, the room is equipped with a TV, a DVD player for movies and a video game system. Child Life specialists are also available to help kids understand their treatment, as well as help them find ways to stay entertained during their stay. You'll be able to talk with your child through an intercom system.
After the child gets the MIBG, he or she must stay isolated because of the level of radiation. The Cook Children's MIBG suite is a special lead-lined room for kids who will get the MIBG treatment. This room minimizes radiation exposure to people outside the room. Doctors and nurses wear special clothing to minimize their contamination should they have to enter the room to take care of the child. The MIBG suite has a room next door especially for the child's family. This gives parents a comfortable place to be near their child and allows them to keep a watchful eye over their child through a window. One caregiver wearing protective clothing can go into the room and visit their child for a limited time each day. As the radiation levels fall over time, the parent may be able to go in for longer periods.
Parents and other family members are an important part of the team caring for the child. During your stay, your child will have minimal contact with staff while the radiation levels are high. Because the Cook Children's staff will be caring for many kids getting the MIBG treatment, they are exposed to higher levels of radiation. As a parent, you will only care for one patient getting the treatment so federal and state radiation safety regulations allow for parents to provide much of the care for their child. The Cook Children's medical staff will monitor your child at all times, give IV medications and check the monitor the exposure to radiation to assure the safety of you and your child. Our medical and radiation safety staff will also spend a lot of time with you to help you prepare for the MIBG therapy, teach you what to do during your stay and after you take your child home. As the radiation is eliminated from the body, parents and staff can begin to interact more with the child. After the radiation falls to a safe level, the child and family can go home.
Your child will be discharged from isolation when the radioactivity falls to the levels specified in regulations. For about a week after discharge, there will be some restrictions and your child shouldn't go to school or daycare or share food with anyone. The Cook Children's staff will help you prepare for going home and tell you about the follow-up care your child will need.
For more information on Cook Children's MIBG therapy, please call Tracey Easley, Neuroblastoma Program Nurse Coordinator at 682-885-4017, or email email@example.com
For information on sponsored clinical research trials, collaborative group efforts, quality improvement and investigator-initiated research currently involved in the neuroblastoma program please email us at firstname.lastname@example.org or call 682-885-2103.
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