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July 24, 2006
By Margot | July 24, 2006
We met with Dr. Willert today to discuss Sam’s scans. The good news is that the CT and bone marrow are clear. The bad news is that the spot on the femur that showed up on the MRI at City of Hope is still there. It’s lighting up on the MIBG (where we saw it as a vague spot) and she said it barely lit up on the bone scan. The MRI showed that it has grown slightly to 2.5 centimeters and they are worried. His VMA and HVA have gone up slightly though still relatively normal (perfectly normal within City of Hope’s range) VMA 7.2 and HVA 17 – up from 10 on the last blood check. This could be due to vitamin C and is still not all that high. His LDH crept up to 710 (I think Neil has the actual reports with him) from 680 or 690 on the last few checks. This is a very subtle change and again still within the normal range. Dr. Willert wants to do an open biopsy of the spot (surgery). Dr. Bowman is an osteo/oncologist surgeon and would do the surgery. He is supposed to call us shortly to get that set up. I guess the recovery time is relatively quick. There is still hope that this is nothing because marrow is clear, Sam has no pain in the area and X-rays are clear. The MIBG can also show healing bone and we remember when he whacked that spot in Australia. The two spots on his lower leg were deemed a healing fracture and there seemed to be no question on those spots at all. Dr. Willert said that we will see from the biopsy either neuroblastoma (bad) or ganglioneuroma (a maturing neuroblastoma) better, or nothing at all (best). Since it is one small spot we can radiate it and do another treatment in conjunction with that ( Fenretinide or Cis-Retinoic acid or something else). To discuss treatment already though is getting ahead of ourselves. It still may turn out to be nothing. We are hoping and praying. We also have Dr. Bolotin looking at the scans since she did the two initial MRIs on the spot. It’s hard because we’ve now gone from the City of Hope MRI machine to the San Diego MRI machine and there may be enough subtle difference in the machines to make things look different. We used a contrast on the San Diego MRI and did not use a contrast at the City of Hope.
Sammy has been at soccer camp this morning and was so happy when I dropped him off. He was running around, dribbling, chasing the balls – hardly even said goodbye to me. He’s over at Joe’s now and I’ll go pick him up for Karate. He’s been so active and healthy it’s just hard to believe it could be back. I so don’t want to tell him about the biopsy but of course, we’ll wait until we have a game plan from the surgeon. We’ll probably cancel baseball camp next week and luckily we don’t have anything much going on in August so he can recover.
I had an OBGYN appointment today with a new OB (mine is out of the country on a family emergency until August 7th -four days before the official due date). I met with his partner this morning after the meeting with Dr. Willert because it was the only time she had open. Anyway, I was an hour and a half late because we were talking with Dr. Willert. Of course I’d cried the whole way there and was still semi-crying in the waiting room. When she walked in, she was so nice and said, “Are you all right, you look like you’ve been crying?” I immediately started crying again and told her why I was so late. She gave me a big hug and started crying herself. Then she got so flustered she forgot to check Charlie’s heart rate and came running out as I was leaving so I could come back and listen to his heart. Nice way to first lay eyes on a new patient I’m sure. Charlie’s doing fine by the way. He’s dropped but not ready to come out yet. She said she’ll see me again in a week and that she’ll be happy to induce me so we can be sure to get the cord blood. She said if we can’t get a time, which has been a problem lately, she can bring me in at midnight. The timing on all this is just beautiful – I don’t know how it will work with Sammy’s surgery but I’m sure we’ll work it all out somehow.
I’ve got to go get Andrew at Samantha’s house and then pick up Sammy. Please say a prayer for our little boy.
Margot
Topics: Progress Reports | Comments Off on July 24, 2006
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