Progress Reports
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Tuesday, April 15th, 2008 Here are some pics from our trip. Will do a full update soon. The Magic Water meeting is on Thursday. We meet with Dr. Willert on Wednesday to discuss a plan, rising numbers and the final read from Dr. Harvey on the March MIBG. Yesterday was the Legoland field trip and the boys had a great […]
Off for Some Fun in the Sun/Numbers
Thursday, April 10th, 2008Sam is looking and seems to be feeling as well as he has in a long time. His ankles are getting much better, he has no pain at all and people keep telling us how great he looks. The nurses when we walked in for the blood check yesterday said he looked fantastic. He’s got […]
MagicWater
Tuesday, April 8th, 2008Thought you all might like to see the press release on what MagicWater has funded so far this year: http://www.prweb.com/releases/2008/04/prweb829254.htm  Pretty amazing. Neil, Andy, Pat, Meryl and Dr. Sholler have moved mountains in a short period of time.  Thanks to all who have helped and are helping make it happen. We have many miles to go…. Margot […]
Unslumping
Wednesday, April 2nd, 2008I have been in a Slump -the particular kind that Dr. Seuss refers to in his book OH THE PLACES YOU WILL GO: “And when your in a Slump you’re not in for much fun, Un-slumping yourself is not easily done”… “You can get so confused that you’ll start in to race down long wiggled roads at a […]
So…
Friday, March 28th, 2008I’m very sorry to have left everyone hanging. I was waiting to hear something official from the head of radioligy. Dr. Willert had said she’d call him. She’s out of town this week so we may not hear his read until next week. Dr. Sholler read the scans and said she only saw the spot above […]
Cast Free!
Tuesday, March 25th, 2008Sammy got his casts off yesterday and he was the happiest boy alive. All day he was waiting for his 3pm appointment and had told his teacher and his whole class that he might get his casts off. I was so hoping he would because I knew he would be crushed if they had to stay […]
Scan
Friday, March 21st, 2008So we’re not really sure how the scan looked. The left leg, where we’ve had uptake in the past, was perfectly clear. The right leg looked like there was some uptake around the knee but it was faint and we’re not sure how much of it to attribute to growth plate issues at this point. […]
Arizona, St. Pat’s, Scan Friday
Wednesday, March 19th, 2008 The boys have had a good spring break so far. We had a great time in Arizona. The boys had a ball at the game and even more fun at the hotel. The hotel could have been in the middle of nowhere and they would have loved it. They got up and made their own […]
Results so far
Friday, March 14th, 2008Dr. Willert called this morning and gave us results so far: Sam’s bone marrow is positive. Barely positive, but barely positive with neuroblastoma is like being barely pregnant. His HVA is 11.6 (down) and VMA is 6.3 (up). The MRI showed no abnormalities – a good thing but she doesn’t know how far it went […]
LDH 799
Wednesday, March 12th, 2008Well today’s LDH is 799. I don’t like going into an MIBG week with 19 HVA and 799 LDH.  For Sam’s age group the high end of normal LDH is 750. However, I think the last time we had an MIBG, I scared everyone to death with high blood numbers beforehand and it was fine and […]
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