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August 1, 2006
By Margot | August 1, 2006
Sam and I just met with Dr. Bowman and it wasn’t very encouraging in terms of doing the biopsy. He said that he’d have to do the biopsy by measurement only on the MRI and he’s used to having plain films (X-ray) to look at in the OR. Since he can’t feel anything on the bone, he said he’d be basically guessing on where the lesion is. They’d have to go in and poke a hole in Sam’s bone and he’d be on crutches for a couple of weeks. If the result was positive, we’d know for sure, if it’s negative, it could still be a false negative. He doesn’t do much with neuroblastoma because it’s not usually a bone surgery disease but if we and our oncologist insist, he’d go in and “do his best.” Ok. No thanks. He is the head of UCSD osteo surgical oncology and I know he knows his stuff, he just doesn’t feel comfortable with doing this biopsy and I could tell didn’t feel it was going to give us definitive results. So, we are back to the decision of either beginning treatment right away based on the scans or waiting and rescanning in a few weeks. Sammy’s blood work was beautiful today. Everything was perfect. His LDH was back down to 652 where it’s been for the past six months or so. Normal is between 400 and 900. Everything else looks great on the blood work. We’ll get the results of the urine test HVA/VMA tomorrow or Thursday – it’s another big marker. If that’s normal, we may just want to wait. The only worrisome thing is that Sammy has been having dry eyes and nose for the past week or so and has starting constantly licking his fingers and sticking them in his eyes (yuck I know) and I can’t figure out why. When he was first diagnosed he had a dry nose and kept wiping it constantly but that was when he had disease throughout his marrow and was fighting the tumor in his abdomen. He’s been swimming a lot???? Taking a lot of different vitamins?? Am I reaching?? He also rubbed his eyes and nose a lot while on accutane but isn’t on accutane now. We’ll see what Dr. Marris has to say about our scans and a plan tomorrow. He may say to just start a low toxicity treatment. I had to tell Sammy about the surgical consult today because he had to come with me. I told him we were going to see a new doctor about a spot on his scan and the doctor was going to tell us if he needed to look at it inside to make sure that it was ok. I tried not to scare him and let him know that it if we did it, it would be like the bone marrow biopsies he’s already had but would be on his leg. He was so cute. He said “There’s a spot on my leg?” and he looked at his leg. I said, “No buddy it’s on the scans, on the inside and the doctors just need to make sure that it’s not something that can make you sick so we are going to talk to a doctor about it today. If it is, we’ll take some medicine for it.” He was immediately suspicious and said, “What kind of medicine?” I told him I didn’t know but that Daddy and I were going to figure it out and that I didn’t want him to worry about it at all but that he should ask me any questions he had about it. He seemed pretty cheerful after that. After the surgical consult he said he didn’t want to be on crutches and I told him I didn’t want him to be on crutches either and I thought we’d skip it. When we got the blood work today he asked if he could see it and he said, “It’s good? No zeroes?” I said “No zeroes buddy, it’s all good.”
On the Charlie front, I met with the OBGYN this morning and Charlie is probably going to stay put for at least another week or so. They can’t give me an induction date because the hospital is doing construction and there are no rooms available. They are only taking people in labor. Charlie is going to come when Charlie wants to come. Let’s all hope I make it to the hospital. Dr. Lim is back early next week and Dr. Marshall said he may be able to find a way around the system. He’s quite good at getting what he wants so I’ll keep you posted next week on that.
Andy is doing fine. Over his fever and currently hanging upside down over my shoulder as I type this telling me to put his Spiderman suit on. We are going over to Monica and Larry’s for dinner and a swim tonight. Monica said she’d give me a hug for Neil and my anniversary ;-). I’ll update again tomorrow after Neil meets with Dr. Marris. Don’t forget to wish Neil a Happy Birthday if you talk to him tomorrow.
Thank you to John London and all of the parents at CHOP and MSKCC who are helping take care of Neil. We couldn’t make it through this without you. Thanks also to Lisa and Monica and Deb and Meredith and all our friends here who have been such help and support. Thanks everyone for the kind emails and phone calls and thanks, Dad, for listening to my panicked and confused phone calls.
Margot
Topics: Progress Reports | Comments Off on August 1, 2006
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