October 16, 2007
By Margot | October 16, 2007
Oh that I were a hacker. I would hack into the Children’s San Diego computer and find our own scan and VMA/HVA results. Still no phone call. As of yesterday when Neil called, they were still pending. I called and left another message this morning. Argh.
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October 12, 2007 – Picture Day
By Margot | October 12, 2007
It is picture day at school today. Mrs Gage moved Sam’s class picture to 11:10 so he could come back from the scan in time to take it. Thanks Mrs. Gage. Should be much easier than the picture he just took. We’re not sure of MIBG results and are going to have to wait for the read on Monday. Makes for a long weekend. Neil and I saw the same spot on his left femur in the full body scan but when we looked at the static scan (which has better resolution and is what the radioligists put more importance on) it looked clear. Loreen, our wonderful tech said she coudln’t see anything which will provide some comfort over the weekend. His ankles were definitely clear so the ankle pain, as we thought, is due to activity. I spoke with the doctor yesterday about it and if it’s not better in a couple of weeks, she’s going to refer us to an ortho. Sam said it’s getting better though. After trying several different kinds of shoes I put him in some that are a size too big and that seems to be helping. It may be less pressure on the achilles tendon. Read the rest of this entry »
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October 1, 2007
By Margot | October 1, 2007
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September 17, 2007
By Margot | September 17, 2007
Are you aware that September is national Pediatric Cancer Awareness month? Before Sam was diagnosed I was vaguely aware of pediatric cancer in the sense that I gave money when I saw telethons and dropped off a toy at preschool at Christmas for Children’s Hospital. fter our pediatrician said the ten words that turned our world upside down, “Sam has a tumor and it’s spread to his bones, ” of course I became acutely aware of pediatric cancer. As someone who works in publishing, I’m often looking for a hook that’s going to make an editor want to buy a book, a title that going to make people grab the book off the shelves. The “For Dummies” title (and great writing) put the first computer book on The New York Times bestseller list. I was pondering while running this morning what the hook would be that gets pediatric cancer, and neuroblastoma in particular, some attention. What is going to make the founders of Google say, “Wow, Bill Gates and Warren Buffet have education and African diseases covered on the philanthropy front, and look, these kids with Neuroblastoma are given the same chemo they were giving them fifteen years ago. That’s criminal. We could give them a much better quality of life and save thousands of lives if we give $100 million to pedatric cancer research.” What is going to make Paris Hilton say, “Gee, jail has made me a better person. Instead of buying ten $5,000 hand bags this year, I’m going to give $50,000 to pediatric cancer. ” What will make ordinary people write /call/email their congressman and tell them to pass the damn Conquer Childhood Cancer Act ? Will it be ugly statistics like those below? Read the rest of this entry »
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September 17, 2007
By Margot | September 17, 2007
Are you aware that September is national Pediatric Cancer Awareness month? Before Sam was diagnosed I was vaguely aware of pediatric cancer in the sense that I gave money when I saw telethons and dropped off a toy at preschool at Christmas for Children’s Hospital. fter our pediatrician said the ten words that turned our world upside down, “Sam has a tumor and it’s spread to his bones, ” of course I became acutely aware of pediatric cancer. As someone who works in publishing, I’m often looking for a hook that’s going to make an editor want to buy a book, a title that going to make people grab the book off the shelves. The “For Dummies” title (and great writing) put the first computer book on The New York Times bestseller list. I was pondering while running this morning what the hook would be that gets pediatric cancer, and neuroblastoma in particular, some attention. What is going to make the founders of Google say, “Wow, Bill Gates and Warren Buffet have education and African diseases covered on the philanthropy front, and look, these kids with Neuroblastoma are given the same chemo they were giving them fifteen years ago. That’s criminal. We could give them a much better quality of life and save thousands of lives if we give $100 million to pedatric cancer research.” What is going to make Paris Hilton say, “Gee, jail has made me a better person. Instead of buying ten $5,000 hand bags this year, I’m going to give $50,000 to pediatric cancer. ” What will make ordinary people write /call/email their congressman and tell them to pass the damn Conquer Childhood Cancer Act ? Will it be ugly statistics like those below? Read the rest of this entry »
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September 10, 2007
By Margot | September 10, 2007
School Days
Sam had a great first week in school. He has Mrs. Gage again (hurray) because she moved to 2nd grade. He loves his new classmates. He took a picture that Tony Hawk signed for him in for sharing today. He was very excited to show it to everyone (thanks again Mikulaks for making that happen- still need to get the thank-you note off to Tony for all of stuff he sent). We are officially back in the routine of things. Sam’s stomach is much better, his bloodwork and urine looked good last week. His hearing aids have been giving some feedbackand I thought it was just becasue the molds are getting too small again but I noticed today that the tubing on one side is brokern and barely hanging on. I did a very high tech fix this morning with scotch tape. Luckily we see our audiologist on Thursday. Since we only have the hospital one day after school, we’ve been walking home every day which Sam loves to do. For the Texas trial we have another blood draw on Wednesday and then another in two weeks. Dr. Myers said that ten days after the infusion is when the cells have been most active/effective. Read the rest of this entry »
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August 31, 2007
By Laurel | August 31, 2007
Here are some pictures from our busy July and August at last. Still battling major tummy problems this morning. Sam was pointing to higher in his chest this morning so I just ran and bought and industrial sized carton of Tums. Hoping that will do the trick. We find out who Sam’s teacher is today. Hope you enjoy the pics.
Charlie enjoying his birthday cake Read the rest of this entry »
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Thursday, August 30th, 2007
By Margot | August 30, 2007
We are home from Texas – got in about midnight last night. Everything went very smoothly. Sam was a champ in the hospital and the Texas Childrens staff was great. Sam’s tummy hurt after he ate for the four days in-patient and he threw up some on the night of the off day but otherwise was in good spirits the whole time. Andy and Charlie came and played with im every day and went back and forth to the Hannons (who were only five minutes away) with either Neil or I for hospital breaks. We hung out at Herman park some, the boys ran through the little water spray park they have there the first night and Andy and Charlie went back and did it again with the Hannons and I later in the week. Andy and I rode the train around the park with Charlie one afternoon and got rained on. It rained quite a bit while we were there and the boys loved watching the lightning. It’s a good thing California is dry because Andy stepped in every single puddle there was. Ann nicely washed and dried his red Converse at least three times while we were there. On our off day from the hospital we met the Buengers http://www.erinbuenger.blogspot.com, our now no longer virtual NB friends, and my dear and most longtime friend Nicole and her son Wyatt for lunch. Erin Buenger is about the cutest little red-headed girl I’ve ever seen. She just sparkles and you can tell she’s smart as a whip. It was great to meet them in person. It’s a small world. Their son Davis goes to Rice and has Jim Hannon as his physics professor this symester. Neil told him not to worry, we’d make sure he gets an “A” :-). After lunch Neil got some work done and Nicole and I took the kids to Houston Children’s Museum. I’m becoming quite the connoisseur of Children’s Museums having taken the kids to at least six different ones now. This one was great. We closed the place down and the kids could have stayed hours longer. Wyatt is about six months older than Charlie (though they are roughly the same size) and he’s so cute (they’ll be buddies when they get older). We had dinner with Nicole and Wyatt and it was great to get to spend the day with Nicole. I almost forgive her for looking so young and well put together. That night as we were all going to bed at the Hannons Sam said. “I like this bed much more than a hospital bed." As we were going home on the plane he said, “I can’t wait to sleep in my own bed.” Something I might say. He and I watched Indiana Jones and the Raiders of the Lost Ark one night in the hospital and are now cracking each other up quoting the line from Indy, “Snakes, why did it have to be snakes?” and then his friend says in his Indian accent, “Asps -vedy dangerous, you go first.” Read the rest of this entry »
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Later on August 24th, 2007
By Margot | August 24, 2007
Oops. Except for the throwing up and nausea side effect. Yuck . Poor Sam. Neil and I just did the trade off after I spent the afternoon at the Hannons with Charlie and Andy. It’s about 9pm and Sam is sleeping.
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August 24, 2007
By Margot | August 24, 2007
We are in Houston at Texas Children’s Hospital. Sam is about to be infused with his CD45 anitbody. It’s a seven to eighthour infusion for four days. He’s been triple medicated (tylenol, benadryll, and steroids)to protect against an allergic-type reaction and he’ll get benadryll every four hours druing the infusions. They expect him to spike fevers during the CD45 infusions but aside from that, they are not expecting any side effects. I’m writing this update from in Sam’s hospital room. Free WiFi in every room, man will we be spoiled when we go home. Sam and Andy are playing on the Playstation and dad and Charlie are out getting some games and books for us. Read the rest of this entry »
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