Austin's Fight Picture Video

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Yeah I know I said I would post Sunday and I didn't. Sorry. Friday's visit with Patel was fine. His counts looked good and he gave Austin a bunch of medicine to take to get rid of his runny nose. Thank God!!! Patel let me know that he has now another patient with Neuroblastoma. A 21 month old. Please pray for this family as they are at the beginning of their fight as we were on October 4th. As I asked Patel for the okay for Austin to go on a weekend trip, of course he said "by all means", he and I discussed the trying to get away from it all but really there is never getting away from it. He described it like a 800 pound gorilla in front of you. There is no moving it. There are days where I forget Austin has cancer and others I cry in fear of losing him. Watching our NB friend Christy willow away puts the fear of one day me in her mother's shoes.

We went back to Patel's today for blood counts and to check up on his runny nose. Runny nose is just about gone. Counts are good. The NSE test came back. When he was diagnosed it was 350, today it is 43 and normal is 12. His may never get normal patel said. It may be up due to infection at the time of blood draw. He told us basically you watch for a pattern. If you see it to start to double or triple you know something is going on and you start running test. Our fear is "the bulge". It was brought up again today. I worry that as soon as Austin is off of Accutane, "the bulge" will be something. He told me at that point they would biopsy it. But for now everything is "stable". We discussed his irritability. Patel feels too a lot is from the Accutane.

Austin's next set of scans will be in November. This will include the MIBG scan that will detect the neuroblastoma. He talked about doing bone marrow biopsy as well. He told us with these children you can never let your guard down, never. You have to watch everything.

Austin is doing well. He is not as cranky now that we are on our off two weeks of Accutane. He is starting to get around a lot better. He seems to be steady on his feet now. He has started trying to feed himself with a spoon. (what a mess though).

We go back to Patel's on Friday for blood counts. Well I better go to bed. I will post on Friday.

Elizabeth