Retinoblastoma Patient & Family Handbook

your child’s white blood cells, which fight infection, and platelets, which are cells that help blood to clot properly. Tests of body salts and chemistries show how well your child’s kidneys and liver are working. Many of these blood tests will be used to monitor your child throughout treatment. Some blood tests can be obtained from a finger prick; others must come from a vein or a venous access device (VAD), such as a Hickman line or a Port-a-Cath.

VENOUS ACCESS DEVICE (VAD) A venous access device (VAD), sometimes called a central line, is a permanent intravenous (IV) tube that can be used for the dura- tion of your child’s therapy, including blood tests, medications, chemotherapy, blood products, antibiotics, and nutritional sup- port when needed. In most cases, this device will prevent your child from undergoing a needle stick for any of the previously mentioned tests. A VAD is inserted when your child is under heavy sedation or anesthesia. The three types of VADs include a Hickman line (single or double lumen), an implanted port (small port placed under the skin), and a PICC line (a central line inserted through a vein in the arm). The decision to place a VAD and determine which type is best for your child during treatment will be made by you and your child’s provider.

n HOW CAN RETINOBLASTOMA BE TREATED? As with most childhood cancers, a combination of treatments are used to maximize the killing of cancer cells. For retinoblastoma, four types of therapy are commonly used: local, or focal, treatments directly to the eye(s); chemotherapy; surgery; and radiation. Each of these therapies will be described in more detail later in this section. The type of therapy offered to your child will depend upon three main factors:

1) whether one or both eyes are affected 2) the stage of retinoblastoma in each eye 3) the presence and extent of disease elsewhere in the body.

Most of the children with unilateral retinoblastoma normally have advanced or high-stage disease with little or no potential for useful vision. In many cases, the recommended initial treatment is enucleation (removal of the eye). If the disease is only in the eye, no further treatment is needed. If the tumor extends into the optic nerve, chemotherapy also may be used. Children with bilateral disease need to have their treatment managed differently. Within the past 10 years, chemotherapy, rather than enucleation or radiation therapy, has become the initial mode of treatment for bilateral and multifocal retinoblastoma in combination with focal treatments. Your child’s provider will speak with you about the best treatment for your child. One option might be to enroll your child in a current clinical trial (depending on the type and stage of retinoblastoma) if one is available. Ultimately, treatment decisions will be made collaboratively by you (the child’s parents) and your child’s provider.

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