January 2003 Updates
1/27/03 Update
January 2003 Updates
1/27/03 Update
Ben's counts were high enough to start chemotheraphy today. This is his 8th course of 2CdA. The next set of MRI and CAT scans are scheduled for next week (Feb 4). Needless to say we are anxious to see what the scans show. We are hoping that the lesions continue to look smaller or stable.
The weather has been fantastic so we have spent some time outside. Here are the little snackers this past weekend on a bike ride to the park.
1/21/03 UpdateAll is well here. Ben could not get chemotherapy today for the usual reason - neutrophil counts are too low. So more neupogen shots for the trouper and try again next week.
We have been helping a wonderful family that has a three year old little girl with JXG in her brain. As far as they can tell she has a single three quarter inch mass in her left thalamic area. She is experiencing arm tremors. She had a brain biopsy and it was diagnosed as JXG. When we talk with them, it brings a flood of memories back - the uncertainty, the confusion, the feeling that everything is moving too slowly, the difficulty in determining treatment options and in getting the right people involved. We are happy to be there for this strong little girl.
Ben the builder...
1/16/03 UpdateBen's counts look good - all the neupogen shots have helped. He may get chemo on Monday, but it is probably not very likely from past experience.
It has been a good couple of weeks. We decided to put Marie in preschool, a big decision because Ben will probably be exposed to more germs, but it is the right thing to do. So far she loves it.
We actually took a vacation for about 4 days to the Lake Tahoe area, our first 'vacation' in over a year. The family had a fun time and we were pretty relaxed. Marie learned to ski! In this picture, Ben is finished with his sled ride and decided to take a nap!
1/2/03 UpdateJust a quick update on a little article about Kathy Nord, one of the volunteers at the Phoenix Children's Hospital Clinic. Kathy is the one that sets up all the Rainbow Kids picnics and events we go to. She is fantastic. Click on the picture of Kathy and Ben to read the article. This picture was taken by a AZ republic reporter, but did not make the paper.
www.stokman.com
