Generally, radiation treatments given to children with leukemia are completed in two weeks. Many children have no short-term side effects. If side effects do occur, it is often hard to differentiate those caused by radiation and those caused by the high-dose chemotherapy that is usually given at the same time. The radiation oncologist is familiar with all possible side effects and is responsible for managing them. Possible short-term side effects include the following:

• Loss of appetite
• Nausea and vomiting
• Fatigue
• Slightly reddened or itchy skin
• Temporary hair loss
• Low blood counts
• Changes in taste and smell (sometimes during the treatment)
• Increased or decreased saliva or dry mouth (ask your doctor about saliva substitutes such as Moi-Stir® or Salivant®)
• Sleepiness (somnolence syndrome)—from cranial radiation
• Swollen parotid (salivary) glands—from TBI

Calories are most important; nutrition can come after treatment. We use whole milk, and put butter on everything: Ethan would eat any time, anything. When Ethan completely lost his appetite during radiation, we used Megace®, a prescription appetite stimulant. It has fairly few side effects and did seem to work for him.

One side effect uniquely associated with cranial radiation is somnolence syndrome. This is characterized by drowsiness, prolonged periods of sleep (up to 20 hours a day), low-grade fever, headaches, poor appetite, nausea, vomiting, and irritability. It may occur during radiation or as late as 12 weeks after radiation treatment ends; it can last from a few days to several weeks. Sometimes steroids are given to help the child recover from somnolence syndrome.

Nine weeks after ending her cranial radiation, my daughter started having severe headaches. She would hold her head and just sob with pain. She also vomited several times. Then she became very sleepy, and dozed on the couch most of the day. She developed a low fever and choked when she tried to swallow liquids or solid food. This lasted for about a week.

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Stephan (8 years old) had no side effects from the cranial radiation other than sleepiness, but he was very affected by it. First, he just started taking naps and generally slowing down. Then the naps got longer, and he was awake less. Finally, he only woke up to eat. Luckily, that part coincided with Christmas vacation, so he didn’t miss much school. Altogether, it lasted about six weeks.