The side effects Sam experienced from the radiation were typical: hair loss, sunburned skin in the radiated area, irritability, and headaches. Eventually, he started on Decadron® to reduce the internal brain swelling. The side effects of this were markedly increased appetite, mood swings, and irritability. A 3 year old on Decadron® is no picnic! There were many days that all I did was prepare and serve food! On those days I was too worn out to worry.

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 Megase®, a prescription appetite stimulant. It has fairly few side effects and did seem to work for him.

About a month after radiation was over for my residual pilocytic astrocytoma, I started experiencing all my side effects. I started having problems with my stomach, and was vomiting every morning. I also had balance problems, headaches, cold chills, and had problems with my shunt. I am still experiencing side effects 6 months later. Radiation did stop the growth of my brain tumor.

There are several concoctions that radiation oncologists prescribe, sometimes called “Miracle Mouthwash,” that often work wonders for mouth and throat sores.

Where the beams entered at two places, his scalp was burned like a sunburn, and aloe vera gel helped to keep that soft.

During radiation I was told to use baby shampoo, not to use a hair dryer, and was given samples of a cream for my scalp called Aquaphor®.

My son, Dan, experienced really no side effects for the first 3 weeks of radiation to treat anaplastic astrocytoma. Then, at the beginning of the fourth week, his hair began to fall out in quite big clumps. By the end of radiation, he had no hair on his head except for a small ball-shaped spot on top, and a sharp line between his ears and below to his neck. Now, 14 months later, he has all of his hair back except in two places, the two spots where the beams entered his head. The exit spots have all filled in nicely, just the two entrance spots remain. One is very bald while the other has a thin fine film of hair. The rest is long and black and curly again. The docs have told Dan that if the hair hasn’t come back by now, it probably won’t. But Dan is handling it. Hats are still cool. And he doesn’t really care what people think.

My daughter Mandy (age 4) had a problem with thick saliva while she was being treated. We started to give her about 200 ml of extra water each day through her G-tube. This seemed to help although she would still have the problem some days, just not as much.

Nine weeks after ending her cranial radiation, my daughter started complaining of 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.

Stephan (8 years old) had no side effects from the cranial and spinal 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 6 weeks.