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June 8, 2007

By Margot | June 8, 2007

Wow, a lot to update, June has been quite a whirlwind so far. Monday morning we wrapped up the Coins for a Cure fundraiser at Sam’s school. TeamSam rode in with their new TeamSam jerseys on and thanked all of the kids for all of the money raised and gave Sam his own TeamSam jersey. It is very cool. The total came to, drumroll please…….over $4,000!!! There is no way to sufficiently thank Lori and Gary Emerson, Sue Divicariss, the Swami’s and all of the kids and families who donated. We were overwhelmed by everyone’s generosity. The money will go to The Penelope and Sam Fund and is being used to help start a Nifurtimox trial here at Children’s San Diego. The bike race is on Sunday and for all of our lofty aspirations of going all the way to Flagstaff in an RV, we will end up going to Oceanside in our minivan to see the team off (which Sam is very excited about and plans to wear his jersey to) and then we will follow them on the RAAM web site: http://www.raceacrossamerica.org/. They invited us up a couple of weeks ago to watch them train at night. They were riding up Torrey Pines Hill (which is a killer, I used to run it when I was in better shape). Andy and Charlie were asleep in the car but they told Sam and Neil and I, they’d be up to the top in eight minutes and down in two, then they zoomed off and shot up the hill and were back before we knew it. When we told them how amazing they are, they casually said, “Oh, we’re not even the hill climbers on the team, those guys can really move.” GO TEAM SAM!! Monday night my Aunt Carla and Uncle Andy came in to town and played with the boys a bit and took Neil and I out to dinner at Georges. It was really nice to get and spend some time with with them and it was the kind of dinner with with wine and coffee and everything- no kids menu-it was a amazing. Great to see you Andy and Carla.

Tuesday was Sammy’s field trip to Legoland. I was a driver and I brought Andy. I was regretting the wine part of the previous night’s dinner after about the fifth rollercoaster. I had Joe, Sam, Andy and Wyatt and they were taskmasters in terms of the rollercoasters. Sammy’s energy was fantastic. I think it was his best field trip yet. They all got to drive the Lego cars. You have to be six to drive the big ones but I didn’t want Andy to have to wait in line for the little kid cars so I told him, “Andy, when the lady asks you how old you are, you say six, OK? You have to be six to drive these cars, and we’re going to pretend you are six.” This caused Andy some confusion and brought on all sorts of consternation from Joe and Wyatt. “What, Andy isn’t six! Why are we going to say he’s six?” Sammy just gave me his little smile and nod and eyebrow raise and started practicing with Andy asking him how old he was.The kid is a master of deception. It was a tense moment when she actually asked him. I wasn’t sure how he would perform and if he did, would she believe him or look at me and say, “This kid isn’t six!” I was thinking, “Will they kick me out of Legoland? What will I tell the other parents and teachers?, I was trying to get Andy and the other kids to lie about his age so he could drive the cars?” What he said when she asked him was, “Uhhhhhhhhhhhhhhhhhhhhh, I’m six.” then he turned to me and said, “I’m six right Mom?” “Yup,” I said. This will all probably come back to bite me later in life but since I’m all about living for the moment these days, I won’t worry about it. Andy did fine driving aside from having to be moved from the wrong side of the road a couple of times. Wednesday Andy got to visit Sam’s classroom and he loved it and Sam was so excited to have him there. Andy was a little nervous in the morning but Sam so wanted him to come that he said, “Ok I’ll go.” It was the high of both of their days at dinner time. I must pause here for a second and say a few words about Mrs. Gage. She is just awesome. Aside from being a damn good teacher, which she is, she is just about the gamest first grade teacher there is. The kids bring her alligator lizards from their backyard and she puts them in a terrarium so they can feed them. She catches when they get loose even though she is not a lizard fan. Sam’s class got to hatch chicks this year, make mummy masks, and do all sorts of fun inventive stuff.

After school Sam had a blood check and Andy had his end of the year party for preschool at the beach – The Beach and Tennis club no less. Neil took Sam to the blood check (more on the results below) and they met Andy and Charlie and I at the party afterwards. It was lots of fun for Andy. He and Beau and Grant ran in and out of waves and made sand castles and basically swam until their lips were blue. Charlie, (Ah, you were wondering when I was going to get to Charlie) got completely covered in sand and had a great time doing his little Yoda walk all over the beach. He is a busy happy guy. He is a big laugher these days and so so sweet. He is absolutely a third child in that he gets dragged to all of his brother’s events and he’s already had cake and ice cream at birthday parties -no first year applesauce carrot cake for him. Chocolate cake will be old hat by the time his first birthday rolls around.

Sam’s numbers: ANC 1500 Red Blood: 8.5 Platelets: 76 (not sure why so low) LDH 550 (good) We are also measuring his copper, cirruloplasm, IL6, IL10, and C reactive protien these days. Copper and cirruloplasm are both well in the normal range since we’ve been taking tetrathiomolybdate. It was high so it’s good that it’s down because (sorry about this, I’ll get Neil to fill in) somehow cancer uses copper in the blood to grow itself more blood supply and (I think) it signals the blood to make more copper. By lowering the copper levels, you are cutting off blood supply (anti-angiogenisis). The C reactive protein was down as well which is good because it should mean that the IL6 is down. IL6 goes into the liver and produces c reactive protein. IL6 is used by cancer to divide and mulitply and the cancer cells and IL6 create what is called a paracrine cycle. Cancer signaling the body to create more IL6 which it uses to create more cancer which signals for more IL6. This is my very muddy understanding of the new things we are measuring in Sam’s blood. Anyone who needs more clarification, please email Neil. He explains it about a 1,000 times more clearly.

Yesterday was Andy’s last day of school. He has a week off and then starts theatre camp and then the last week in June, Sam, Andy and Charlie and I will take a trip to New Mexico (wohoo!) while Neil is at the FDA meeting in Washington DC. Sam starts chemo next week again. He’s out of school on the 19th and then we will get ready for his 7th birthday party in July. Off to fetch Sam from school. I promised I’d bring his bike today so he can ride it home. Sorry for typos. Margot

Topics: Progress Reports | Comments Off on June 8, 2007

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