Jessica posing with her her radiation calendar. 
The mask to hold Jessica's head motionless on the irradiation table.
Jessica posing with her her radiation calendar.
The mask to hold Jessica's head motionless on the irradiation table.
Jessica's Home <- Back, Induction Next -> Consolidation
Jessica had leukemia cells in her cerebrospinal fluid, the fluid that surrounds the spinal cord and brain, at diagnosis. Most cases of ALL are not CNS positive at diagnosis. This is a frequent site of relapse for ALL patients and must be treated more aggressively if leukemia is already present at diagnosis. Cranial radiation was prescribed for Jessica. In addition to the radiation, Jessica had received weekly doses of methotrexate (intrathecally) during Induction.
Once Jessica reached remission, radiation therapy started. This occurred during the first two weeks of November, 1999. She received 600 rads to the spinal column and 2400 rads cranially. She received 200 rads per day for 12 days (1st three days brain and spinal therapy, last 9 doses were applied to the brain only).
The staff was incredible, making the sessions almost even enjoyable. Thanks to all of them for getting her through the process so painlessly. The thought of radiation therapy and its effects on the human body are quite scary, but the sessions require only a couple of minutes and she doesn't feel a thing. During this period she would get radiation during the morning, then school in the afternoon when she felt well enough.
The therapists had four hours of prep work the Thursday prior to starting Jessica's therapy. Jessica was put to sleep while they molded a mask for her face. This mask (pictured above) mounts her face to the table of the irradiation machine, very tightly. The slightest movement while receiving radiation could cause devastating results, such as blindness.
She was put to sleep for the first three sessions to make sure she did not move during the spinal sessions, but chose to stayed awake for remaining sessions. Her mom and dad were so proud of her for staying awake. I can't believe there are too many 5-year olds that would allow their face to be bolted tightly to a table and be left alone in a large room with a large noisy machine. The radiation would be applied for only 20-30 seconds per side, but she had to remain perfectly still. How did she do it? Music! Her favorite was the Chumbawambe song "I get knocked down, I get up again." Her only complaint was that of a strong and nauseating odor while she was receiving radiation to her head. The radiation staff informed us that other patients receiving cranial radiation have made this same complaint. There is no perceivable odor in the room and Jessica said the smell went away as soon as the radiation session ended.
Initially, Jessica developed nausea and vomiting about 4 hours after receiving spinal radiation. Zofran took care of the nausea well enough that she was able to attend school. Later, she had daily bouts of severe headache followed by vomiting. These bouts were always in the morning and probably resulted from brain swelling secondary to radiation. Normally, Decadron can be given to decrease these side effects. However, Jessica developed chicken pox just prior to radiation. Steroids can not be given during chicken pox.
There are many other side effects of radiation therapy. The most concerning are cognitive and growth problems not seen for sometimes years after the therapy. However, our first major side effect was Somnolence Syndrome. Given Jessica's age and dosage, she had a 50% chance of experiencing it. It occurs 4-6 weeks after the therapy and lasts 4-14 days. Symptoms are a slight fever, constant sleepiness, no appetite, and no thirst. This hit Jessica the Wednesday prior to Christmas which fell on Saturday that year. A fever of 101 (related to a viral infection) hit and off mom and Jessica went to the Cleveland Clinic ER at 10:00PM. Her fever never got much worse, but never got any better either. Then 2 days into hospitalization Jessica became very sleepy and she no longer had any interest in eating. All the cultures came back negative so she was released to home on Christmas eve. We went to church with the our neighbors, the Rovniak's, then set some cookies and milk out for Santa. Christmas morning she didn't even want to get out of bed to open presents. She said she was too tired and her stomach did not feel good. Brother James was bouncing off the walls, and she was finally convinced to go lay on the couch in the living room. She opened her presents, without emotion, then took a 3 hour nap. Grandma and Grandpa came for the afternoon , and Jessica went back to bed at 5:00PM for the night. The day after Christmas she never got out of bed until we took her back to the hospital at 4:00PM, her temp was back up to 101 and going as high as 101.5. This was day four with no food, and at that point she was also refusing to drink anything. She spent another 5 days in the hospital receiving IV antibiotics and fluids. The viral infection cleared during the course of her hospitalization, but the fatigue and anorexia continued. She lost almost 5 pounds from not eating. It became clear that her viral infection was complicated by somnolence syndrome-a classic case. She was started on Prednisone to combat the anorexia and sleepiness. Even then she still did not eat or drink much of anything at all. It was very challenging to get her to eat and drink. Her anorexia lasted for about 20 days (even on steroids). IV fluids at night were a a huge help in keeping her hydrated. She very slowly overcame Somnolence Syndrome after 3-4 weeks.
Jessica's Home <- Back, Induction Next -> Consolidation
