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July 31, 2006
By Margot | July 31, 2006
Whew! What a day. Neil is on a plane to Philadelphia to meet with Dr. Marris and will also meet with Dr. Cheung at Memorial Sloan Kettering in New York about treatment options. We got an email from Dr. Marris this morning saying that he wouldn’t do a biopsy but would move forward with treatment right away. Neil and I thought it would be best if he had a face to face meeting with him on it.
In the meantime I talked with Dr. Bolotin (City of Hope) and Dr. Willert and they would both do a biopsy to be sure. City of Hope’s radiologist doesn’t believe the MIBG was real uptake and said it was totally non-specific. They are more worried about a small spot that showed up on the MRI on the other leg – a spot that Children’s San Diego radiologist wasn’t worried about at all (saying it looked like old fracture to them). Dr. Bolotin said she thinks we’ll end up in treatment one way or the other because if the bone keeps having small fractures, it may mean that there is Neuroblastoma present but she would still do the biopsy. If it is negative, we rescan in a few weeks and hope for the best. What we need to make sure of is that the surgeon feels the spot is easily accessible and that he can get a good tissue sample – otherwise there is no point in doing a biopsy. I don’t know but I think we will go forward with the biopsy just to be sure. I just don’t think I can start him on treatment until I know for sure that it’s back. Neil will find out more from Dr. Marris on Wednesday when he meets with him. Up goes the roller coaster – down goes the roller coaster I was a complete wreck when I met with Dr. Willert and she gave me some hope (slim I know) that it still might not be disease. Anyway, we are back where we started which is with a meeting with the surgeon tomorrow at three and then hopefully a date for surgery soon. I’ll make sure he thinks he can get a good sample. I dropped off the scans today. Neil will be back on Friday and we should have some news about treatment options if this does turn out to be relapse. If you can’t make any sense of all this, I’m sorry. I’m pretty muddled.
In the non-cancer part of our world today, both boys opted out of camp today. We were a bit late and Sam was too shy to go to baseball camp and Andy held on to my leg and wouldn’t let go when faced with buddy sports camp. So they came home with me and Elizabeth took them to Chuck-E-Cheese which they’ve both been wanting to do forever. Thank you Elizabeth!! Not that I don’t love going to Chuck-E-Cheese – who could think of anything better? I think it might have done me in today but it sure made the kids happy. I remember my girlfriend dragging me there for a birthday party for her daughter before I had kids and I thought to myself, “My kids will never come here.” Ha! Chuck-E practically knows Andrew by name.
It’s our anniversary tomorrow and Neil’s birthday on Wednesday. Not much happening on either front but as Neil said, maybe Dr. Marris is his birthday present. He has been so great to us already in terms of communication and response.
Margot
Topics: Progress Reports | Comments Off on July 31, 2006
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