Rhabdomyosarcoma Patient & Family Handbook

VENOUS ACCESS DEVICE A venous access device (VAD), sometimes called a central venous catheter or central line, is a temporary or long-term intravenous (IV) tube that can be used for the duration of your child’s therapy (keep in mind that “therapy” may be used interchangeably with “treatment”). It is placed in a large vein in the chest or the arm. These long, flexible catheters empty into or near the heart, allowing necessary treatments to be given within seconds. They can be used to administer medications, fluids, chemotherapy, blood products, and nutritional support as needed and to draw blood for testing. A surgery is performed to insert the VAD, and your child will be sedated or given general anesthesia for the procedure. It will be placed either before chemotherapy begins or within the first month of treatment. Not all children will need a VAD. This will be determined by you and your child’s healthcare team. The VAD will be removed when it is no longer needed. There are different types of VADs, such as • an implanted port inserted under the skin near the collarbone • a tunneled central venous catheter (Broviac® or Hickman) that has a tube • a PICC (peripherally inserted central catheter) line, a central line inserted through a vein in the arm Your child’s healthcare team will discuss each type with you and help you choose the best VAD for your child’s treatment. Each type of VAD requires slightly different care. A port requires almost no care at home because the port and catheter are under the skin, but a special needle is inserted through the skin into the port each time it is used. This is called “accessing the port.” Tubing can be attached to the needle if needed to give medication or IV fluids or to draw samples for testing. External VADs (such as a Broviac, Hickman, or PICC line) requires routine changes to the dressing (which covers the exit site of the line and keeps it in place to prevent infection) and to care for the skin around the tube. These external lines must be routinely flushed with a solution to keep them working properly. You will be taught how to care for the device at home. CHEMOTHERAPY Chemotherapy is a treatment of medicines that help kill cancer cells, shrink tumors, and prevent tumors from spreading. Several chemotherapy medications are effective in treating rhabdomyosarcoma and soft tissue sarcoma, but no single chemotherapy medicine can control this disease by itself. As a result, chemotherapy medications are usually given in combinations, through a vein. Treatment usually lasts several days and often is given in the hospital. Your child may receive some chemotherapy medicines that can be given in a clinic or at home. When chemotherapy is needed, close monitoring of the child is a priority. Your child’s healthcare team will explain the possible side effects of the specific chemotherapy treatment recommended for your child. RADIATION Radiation therapy is a special kind of X-ray treatment used in rhabdomyosarcoma and some soft tissue sarcomas. Radiation treatment is very precise and is given in strictly measured amounts by radiation therapy experts. If radiation is necessary for your child, the radiation oncologist will discuss with you exactly how the radiation will be given and how long the treatments will last. In general, children experience few side effects while they are receiving radiation therapy. Some children become more tired than usual or have decreased appetites. There can be delayed side effects, depending on which areas of the body are treated. The radiation oncologist will discuss possible side effects with you in detail. You may also choose to read the Radiation Therapy Handbook for Patients and Families, which is available on the APHON website. HOW LONG WILL MY CHILD’S THERAPY LAST? The length of treatment, or therapy, depends upon the type and stage of your child’s tumor at the time of diagnosis. Usually the treatment is given over several months, and it could last as long as a year. Follow-up blood tests and check-ups between chemotherapy treatments are usually done in the clinic or doctor’s office instead of at the hospital.

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