We have had a few busy days since our last update. Samantha has been able to walk with assistance. Her balance seems to be declining though. We had a CT scan done on Monday to check her ventricles and they looked fine. It seems her physical abilities had gotten better but are starting to get worse again. Mentally we are seeing a pretty significant decline as well. It varies by the hour, sometimes the minute. It is quite frusterating for all of us, especially Samantha.
We went to meet Dr. Holyk yesterday who is a hollistic doctor not to far from us. We have put her on a few additional supplements/hollistics he recommended to try to boost her energy. We have also started laser therapy with the accupuncturist we have worked with in the past. It seems her seizures are starting up again and that is one of the areas we are working on with different forms of accupuncture.
As for conventional medicine, we have a tentative appointment at Shands Childrens Hospital in Gainsville, Florida on Monday. We had sent her scans to them for review and received a call yesterday with an appointment time for Monday. We are, however, waiting to hear from the doc there to see what she has in mind for Samantha. We are pretty opposed to any chemo therapy so it would be a waste of time if that is what she is thinking. There are some new clinical trials using other agents to target certain receptors (one of which Samantha has an elevation in) that we may consider if they suggest one.
Ironically Monday also is one year from diagnosis. It is hard to believe that she has been battling this monster for a whole year on the other hand it feels like it has been going on for an eternity. It blows our minds that we walked into the ER with a happy, otherwise healthy little girl and we were led into the biggest nightmare of our life. Many people don't endure in a life time what our baby has had to face in one year. She is quite amazing. Either way she/we have had enough and are ready for our miracle. Please continue to pray for Samantha and us in our decision making for our sweet princess.
With love & hope,
Audra, Kurt, Christopher, Samantha, & Jason.
We went to meet Dr. Holyk yesterday who is a hollistic doctor not to far from us. We have put her on a few additional supplements/hollistics he recommended to try to boost her energy. We have also started laser therapy with the accupuncturist we have worked with in the past. It seems her seizures are starting up again and that is one of the areas we are working on with different forms of accupuncture.
As for conventional medicine, we have a tentative appointment at Shands Childrens Hospital in Gainsville, Florida on Monday. We had sent her scans to them for review and received a call yesterday with an appointment time for Monday. We are, however, waiting to hear from the doc there to see what she has in mind for Samantha. We are pretty opposed to any chemo therapy so it would be a waste of time if that is what she is thinking. There are some new clinical trials using other agents to target certain receptors (one of which Samantha has an elevation in) that we may consider if they suggest one.
Ironically Monday also is one year from diagnosis. It is hard to believe that she has been battling this monster for a whole year on the other hand it feels like it has been going on for an eternity. It blows our minds that we walked into the ER with a happy, otherwise healthy little girl and we were led into the biggest nightmare of our life. Many people don't endure in a life time what our baby has had to face in one year. She is quite amazing. Either way she/we have had enough and are ready for our miracle. Please continue to pray for Samantha and us in our decision making for our sweet princess.
With love & hope,
Audra, Kurt, Christopher, Samantha, & Jason.
posted by HopeForSamantha @ 9:23 AM
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