Dr. MacDonald called last night. The spinal fluid they collected shows that Orion does not have a pure germinoma. Instead it's called nongerminomatous GCTs. This is even less common than germinoma so there's even less data on treatment. Likely, they will add a third chemical to the chemo, and have to raise the radiation level. Disheartening news.
But this is one of the reasons that we are headed to New York today. We will have a consult with Dr. Jeff Allen, a pediatric neuro-oncologist. He'll present his interpretation of Orion's case and his treatment suggestions.
Back to MGH tomorrow.
My son Cole, 11 years old was just diagnoses with NGGCT yesterday. He has never had any health problems his whole life. Obviously my wife and I are in complete torment now. He had headaches last Sat., just thought it was the normal sinusitis/cold. Took him to Dr. on Monday, then our lives changed! I think I have become a neuro oncologist in the past 3 days. He is not going to be operated on because the they feel that it is NGGCT because of the tracers. He will be starting Chemo today. I can't think about future and just try to stay in the moment. Reading you blog on Orion has enlightened me on the battle ahead for our wonderful son. God Bless, Craig Cunningham
ReplyDeletecraig.cunningham@comcast.net
Hi, I am Karen From Australia. My son was diagnosed with NGGCT in June of 2009. My email is kgiyanto@dodo.com.au if anyone wants to compare stories xxx
ReplyDelete