Progress Reports
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Monday, March 10th, 2008 Sam and Max with Tony Hawk   Sam and Joe Little Joe Monaco (Sam’s best friend) to his mother last week: “Mom, I don’t want to give up my dream of being an airline pilot but I think I’m going to be a scientist and cure cancer.â€Â Colleen told him that he can buy […]
Copper
Monday, March 3rd, 2008We have an MRI scheduled on March 11th and an MIBG on March 20th. HVA today was 19 (Cripes!) and VMA was 5. The consensus on Sam’s growth plates is that his copper levels are too low, correlated by the fact that, well, his copper levels are too low. His cirruloplasm today was ten which is […]
Winning Who is Worse Off
Tuesday, February 26th, 2008We went to Dr. Chambers today. He was sick on Friday so we postponed until today. Sam’s other ankle is broken and they put a cast on it today. He picked blue just like his hearing aids -he has one blue and one red cast.  He was hoping he might get his red cast off […]
VMA/HVA
Tuesday, February 19th, 2008Our VMA last week was 3. Nicely down and very normal. HVA was 14.5 just down .5 from last week and still high. Don’t know what to think.  Margot Â
Tuesday, February 19th, 2008
I haven’t felt much like updating lately. I still don’t have the VMA/HVA numbers from last week but have a call in to Jayne today and should have them back shortly. We went in to the orthopedic specialist on Friday afternoon to have them look at Sam’s ankles again as he was still limply a […]
Quick update to last post
Wednesday, February 13th, 2008Dr. Sholler said the white count numbers are probably because Sam has a virus and that all the numbers together look good.  Off to do something fun with the boys this afternoon just to keep the contrast going. MargotÂ
Confusing Numbers
Wednesday, February 13th, 2008We finally got last weeks VMA/HVA back. The VMA was exactly the same, 4.4 but the HVA was very high, 15. It hasn’t been that high since we initially relapsed but at that time the VMA rose with it. VMA is less dependant on diet so most doctors put more weight on the VMA number. We […]
Hope in a Fortune Cookie
Friday, February 8th, 2008I’m woefully behind this week at just about everything, work, school stuff, and of course, posting on the website. Sorry for the long delay. The only numbers of import that I have to share this week are LDH: 630 (normal) and IL6 - 33 Normal is below 3.1. It’s way above normal. The IL6 number was taken back on the […]
Andy is 5
Thursday, January 31st, 2008Andy had a full four days of  birthday celebration. We had a big party at Pump it Up! on Saturday (same place we had Sam’s - I swear in my next life I’m going to open a Pump it Up! The place is a goldmine). The kids had a great time and Andy was in his element. Maureen came […]
Ankle Update
Friday, January 25th, 2008Sam is already walking better with the new braces. He’s only had them for 3/4 of a day. I swear I’m not imagining it. Stupid, stupid mother for not doing this sooner. Argh. I am so mad at myself. The wonderful sports medicine doctor we saw today, Dr. Martinez was great. He did a full work up […]
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