The Plan

Zoë had three appointments on Thursday. The first appointment was for a second, more in depth, occupational therapy evaluation. We were given several exercises we can do at home so we will not have to drive to Kansas City as much. She likes these appointments and has fun going to them, so we are going to try to work a few of them in when she goes for treatment. The second appointment was for a physical therapy evaluation. She has a few issues with the strength in her right ankle but nothing to be overly concerned about. We were given a band we can use to help strengthen her ankle at home. Physical therapy is not really needed at this time. She would get a small benefit from it, but with everything else going on we have decided to concentrate on her treatment for her tumor and occupational therapy.
Zoë’s third appointment was with her oncologist, Dr. August. I did not realize she had never met him until we were on the way to his office. She was hoping for a girl doctor and was slightly disappointed that her doctor was a boy. She had a great time at her appointment and even got to pick a prize from the prize closet (she picked suncatchers).
Dr. August has obtained several second opinions on Zoë’s diagnosis. He sent her scans to other pediatric oncologists and to a team at St. Judes Childrens Hospital. They have all agreed with his preliminary diagnosis of a low grade optic pathway glioma. Because everyone agrees on the diagnosis, we are not going to do a biopsy. It is too risky and will probably only tell the doctors what they already know. She will also not be having surgery to remove her tumor. We feel the risks are too great at her age for surgery. She will also not be doing radiation. Again we feel that the risks are just too great at her age. We have decided on chemotherapy as the treatment option we are going with for Zoë. She will be going through chemotherapy for approximately one year. This coming Friday she will have a semi-permanent IV, called a port, placed in her chest. Each time she has chemotherapy or needs blood drawn it will be done by accessing her port. This will greatly reduce the number of times she will have to be “poked”. She will begin weekly treatments the following Friday (May 20th). Her chemotherapy will consist of mainly two medications, Vincristine and Carboplatin, given through an IV. Vincristin works by interrupting cell division. Carboplatin works by attacking rapidly dividing cells. She will begin weekly treatments until the end of July. She will continue to have treatment after the end of July but will have a few weeks off here and there. When she does not go to the clinic, she will have a home health nurse come and draw labs for Dr. August. It will be crucial to know her blood counts every week even though she may not be going to the clinic.
Zoë will still be able to begin Kindergarten in the fall. She is excited about going to the “bulldog school” (as she calls it). She is such a charismatic little girl we know she will have no problem making new friends.
For those of you that would like more information, please go to www.curesearch.org