My name is Katie and my son is Garrett. He is 2yo, turned 2 in Jan. My husband and I have two other children, 10yo daughter and 8yo son. Garrett is amazing and beautiful, and he has NB. He was dx last month, on April 6. He has completed 2 rounds of chemo and we go for our 3rd round next week. He is on the COG protocl, ANBL0532. His primary tumor is paraspinal, with no spinal cord involvement. He had mets on his skull in 3 places and also to the marrow - 50% involvement. The tumors on the skull were what prompted a diagnosis - he had extreme head pain due to flow in his sinuses in the brain being blocked. We were lucky, from what I have read; Garrett was diagnosed within a week and a half of onset of symptoms. I owe that to our pediatrician first, and our oncologists at the Children's Hospital. We just completed stem cell harvesting, where we received good news. His marrow is now clear and he gave up zillions of stem cells, enough for 6 bags and much more than was needed. He had CT scans after the first round (due to some new pain that ended up being unrelated, thank goodness - it was only marrow pain from the GCSF) which showed dramatic improvement of all tumors. We should have more scans at our next visit, as per protocol.
I don't have many specific questioins right now, but I wanted to introduce myself and give some background.
Mark Dungan: If you happen to read this, I wanted to say "Thank You". Your blog about your daughter was the first and only I have found that gave me enough information to ask questions, to give me hope for the future, and to give me my own "purpose". I have learned so much - you are on a first-name basis in our house! I have read your entire blog and am now re-reading parts that are currently relevant to me. So thank you, you have made such a difference.
I look forward to getting to know everyone and belonging to a place where I can learn even more about how to help my son.