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July 11, 2007

By Margot | July 11, 2007

Sam’s LDH is steadily on the rise. It jumped to 704 last week and was measured at 743 yesterday. Though we are still within normal range, the trend is not good. We did a VMA/HVA yesterday and should get results back tomorrow or Friday. A couple of people have asked me lately if LDH is a cholesterol level so I thought I’d better explain what it is and why in correlation with several other things, it can be used as a cancer marker. LDH is Lactic Dehydrogenase and is part of a blood chemistry test. It is a measure of tissue breakdown. All cancer cells produce LDH as part of a high turnover rate with destroyed cells. It can also be a measure of cardio problems and other things but for our purposes, in conjunction with other blood and urnine tests, it can be a good NB marker. There are some experts that don’t pay it any mind but most parents and doctors keep an eye on it. I’m trying not to panic.

Sam is feeling great, he’s actually at soccer camp all week and loving it. He asked me today in the car if when he finishes chemo, he’ll get his speed back. It broke my heart. I told him again about Lance Armstrong, I didn’t tell him that he’s had about a bajillion times more chemo than Lance and I didn’t tell him that I don’t know when we’ll be finished with chemo. Texas Children’s is still growing our vaccine. Sam’s cells are slow going due to all the chemo he’s had. They think his vaccine will be finished in a couple of weeks and then they’ll do a couple of weeks of safety testing. So, we may be in Houston in August. I hear that’s the best time of year to be there (ha ha). If the VMA/HVA comes back high we may schedule a scan before Houston so we know what’s going on. I read today that strenuous exercise can casue an elevated LDH and he got his blood taken right after soccer camp yesterday so I was trying to talk myself into the fact that he’s done some strenuous exercise before blood tests for the last three weeks. See what a good rationalizer I am? LDH can also be elevated when a lot of cancer cells die, i.e., treatment is working. I’m trying to talk myself into that one too, though it’s usually at the beginning of a treatment. However, worrying must take a backseat. Friday is Sam’s birthday and we have a lot to celebrate. He wants to go to SeaWorld at night on his actual birthday, Saturday is his party and Sunday is the Wild Animal Park. It will be quite the weekend. Sam’s very excited. I’ll post more on that Friday and Saturday. Andy is doing fine. His new word, thanks to his new obsession with BenTen, is “dweeb” and he keeps calling everyone a dweeb. He and Sammy are trying a tutoring program together and they like it. It’s an hour two to three days a week. Thanks Meryl, for the recommendation.Andy has also his little summer school/camp Tues/Weds/Thurs afternoons so we’ve been running from here to there with all the kids a lot. Little Charlie has been fevery and miserable the past couple of days. It’s not an ear infection as I thought, it’s some kind of virus that’s going around that he caught, according the pedatrician. Poor little guys just wants to lay around and be held by someone. I’ll post VMA/HVA as soon as I get them back.

Margot
July 3, 2007
Ahhh…..
 

 

Just outside of Echo Canyon on the way to our camping trip.
As I ‘m sure you’ve surmised by now, our life in California moves at about 100 miles per hour. While the boys stayed at that speed in New Mexico, I slowed down to about 5 miles per hour and took a breath for a week with no crazy agenda. After having a sweaty, cursing fight with the car seat in Albuquerque at the Budget parking lot during which Sam and Andy were helpfully advising from Grandma Sara’s air-conditioned car, “Count to ten, Mom!” “Maybe you should go to your calming down place!” and “Isn’t that a bad word?” I ended up switching to a roomier van, clicked in the car seat and drove the kids up north to Pojoaque. As soon as I came over the hill and saw the red barrancas set against the deep blue sky, I let out a sigh of relief. I drove the car up the dirt road to our house, hugged my dad and Stephanie and then Stephanie led me to the hammock in the back yard under the cottonwoods and brought me a margarita. The boys had space. They played with the dogs, chased the chickens, found fresh eggs, played croquet, baseball and badmitten in the back yard and generally were outside all week with no video games in sight. Sam played chess with Grandpa, Andrew chased away imaginary coyotes and Charlie became involved in everything he could find. He reminded me of the guy in Sixteen Candles who’s parent’s tried to drop him off at the dance and he bangs on the doors yelling, “but I want to be with you guys.” Charlie does not really buy in to the concept that he’s only ten months old. He said his first official word on our trip, “dog.”

Sam getting kissed by Molly the puppy and Peanut the dog.

We went horseback riding on Monday and the kids loved it. Sam rode Hershey and Andy rode Reggie. After the boys rode, I went out on the barrancas with Stephanie’s friend Talisa for a quick ride. It was so pretty and relaxing.

Boys on horseback
 
Maureen came in on Tuesday and we all went out for some great New Mexican food at Rancho de Chimayo that night, an old family favorite. To Maureen’s dismay, we took her on a camping trip with us on Wednesday up to Conjilon Lakes. She was a great sport though and we were all very happy to have her along. We stopped at Echo Canyon on the way where the boys yelled “You are a butthead!” against the giant curved rock wall and heard it echo back at them numerous times. I yelled all three of the boys names at the top of lungs with the irrational thought that it would ensure them some permanence on this earth. The boys got to sleep their first night in a tent, Granpa took them fishing and they got to roast marshmellows.Charlie walked around the campsite getting dirt from head to toe and banging on things. Sam caught three fish (two of the biggest). Though he started out strong, Andrew was in a tired funk by the time we started catching fish and didn’t catch any. Charlie played with Maureen by the car most of the fishing time or rode in the backpack on my back.

Andy,Charlie, Grandpa and Maureen around the campfire

The boys and Grandpa fishing.

Charlie with dirt on his face banging sticks on the cooler

Boys fishing.

 Andy on the swing in the backyard

Stephanie and the boys with a baby chick on the hammock.

We came back from camping and Maureen and I had a day in Santa Fe with Charlie, then we drove up to my mom’s in Albuquerque and she had a little party for us Friday night. I got to see my old friend and croquet partner, Lonnie Sisson. He’s a fantasitc guy, not to mention a brilliant artist and it was great to see him and Judy. My mom invited three boys from down the street the same age as our boys and they had a great time together. Meanwhile back on planet cancer, Neil was at the FDA meeting in Washington serving as the parent liason for two days of last week. He said he was very glad he went. He also got a little time to himself. We were all very happy to see him and Charlie has been clingling to him for dear life since we’ve returned. I’m trying to think up event/promotional ideas for Magic Water. I keep thinking I should do something dramatic like stand outside of the Whitehouse with a sign so the press will be all over it and call me the crazy cancer mother and I’ll start a pediatric cancer revolution, but realistically, work and our three young children stand in the way of that plan. I’m open to other ideas though.
 
Sunday was Joe’s birthday and the boys were happy to be back for the party complete with jumpy and cake. Yesterday Sam and I were at the hospital from 8:45am to 7pm. It was the long first day of chemo made longer by the fact that it’s 4th of July week. Also when we go the counts back, we found out Sam needed blood (three hour infusion). Sam’s LDH was 643 (uncomfortably high for Neil and I but HVA and VMA were good last week so we’ll wait until the next blood draw before we panic). Max was in the clinic too getting blood and the boys watched a movie and played some games together while Meilissa (Max’s mom) and I talked about shoes – just kidding we talked about cancer therapies of course.
 
Tomorrow is the 4th of July. . Next up- Sam’s birthday. Lot’s of excitement and a big surprise for Sam on the Sunday following thanks to the Wild Animal Park . The boys are very excited that Grandma Joan is coming with our soccer star cousins Emily and Maddie Hutchison in August. Shaping up to be a good summer.
 
Margot

Topics: Progress Reports | Comments Off on July 11, 2007

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