Andy had wonderful Make-a-Wish trip to Orlando. The volunteers at Make-a-Wish were great. They really took care of everything. It was a great experience for the whole family. We stayed at Give Kids the World Village. This place is kid paradise. They have an ice cream parlor that is open from 9am to 9pm and dispenses all the ice cream you can eat all day. They have arcade games, a train station, swimming pools and gingerbread house where you have your meals. It is not unusual to run into Disney characters at the gingerbread house. Andy's favorite place was the Castle of Miracles. They gave us tickets for the parks and attractions in the Orlando area. Every evening when we returned from the parks both kids found new toys on their beds. The kids had the best time.
November 2000 - Andy had a chest x-ray and abdominal ultrasound and they were normal. He had a bone scan and that was also normal. The bone scan was different than prior bone scans because Andy didn't have a port this time. They injected the isotope in his left arm and it showed on the scan. He also had an MRI of the brain. The MRI was unchanged from the prior 2. The MRI showed an abnormality but it has been there since the first MRI that was done at diagnosis. The oncologist called it a venous angioma in the right parietal lobe and said that Andy was most likely born with it. What I have read about it says that it is very common, very benign and is best left alone.
Andy will now be seeing his oncologist every 3 months. He will get an ultrasound and chest x-ray every 3 months. He will get a bone scan every 6 months and will get 1 more MRI of the brain in a year. I had thought, because they were doing the ultrasounds and x-rays more frequently that the most likely place for relapse was the belly or lungs. Actually the most likely place for relapse is the bones. They do ultrasounds and x-rays more frequently because if a tumor grows in the lungs or abdominal area it can be there for quite a while before causing any obvious symptoms. Tumors in the bones will cause pain and tumors in the brain will cause neurological symptoms.
Andy is still at risk for a secondary leukemia from his treatment. They check his blood counts at each visit. His doctor feels that this risk is very low. Andy also sees the radiation oncologist once a year to check for late effects of the radiation. This doctor also does not expect Andy to have any long term problems.
The statistics for the NWTS #4 study were published. The relapse free survival rate is 80-85% 2 years from diagnosis. Andy was on NWTS #5 and received a little more aggressive treatment. They tell us the preliminary results from NWTS #5 are pretty much the same as NWTS #4. Children with CCSK have relapsed more than 2 years after diagnosis so as Andy's oncologist said 'the odds are in his favor, but we are not out of woods yet'.