Worries
By Margot | January 24, 2008
We got back last week’s VMA/HVA and it is good. VMA 4.6 (same) HVA 8.5 (down from 10.5). The Veg F number is 333. It was 31 in October. It is now five times normal. Five times normal is never a good thing. Veg F is an inflammatory marker and can signal cancer, it can also signal inflammation due to something else, i.e. Sam’s ankles ( I hope I hope). We redid the test today and it takes about two weeks for the results. We are hoping it’s down, if it’s the same or higher, it could still be ankles since they are not getting better but it won’t give us much peace of mind. We finally got the active braces today and it’ll take a few days to see if they help much. We’re seeing a sports medicine guy this afternoon to try and get Sam better. The ankles seem to be getting worse and he’s in a lot of pain walking though he won’t admit it. We are going to have him take a break from basketball which we tried to gently explain to him last night and he said, “You mean I might have to miss a game? Why?” “Because you are having trouble walking” was not a good enough reason. Neil and I just want him out of pain and able to walk and run.  Â
He’s home from school today with a bit of a head cold. He could have probably gone but since we had three different doctor’s appointments in one day, I figured he could use a break. He’s been doing really well in school and things all seem to be clicking (spelling, reading, math) which is so nice to see.
Andy’s birthday party is on Saturday and he is so exicted. He’s been waiting to turn 5 forever. He keeps telling people what to get him -very nice. He told me the other day, that he wants to be in kindergarten and not preschool anymore. Charlie is a wild man. He favorite word is still “jump.” He’s says “I’m juump!” when he’s about to jump off something way too high for him.
There are several kiddos out there who are not doing well at all. I want to will them to get better and then I read their websites and they are worse. It just sucks. Little Isaac Leiser died yesterday. He was diagnosed in May and his tumor became chemo resistant. He was trying to get to Vermont for the Phase II Nifurtimox trial but sadly, didn’t make it.  www.caringbridge.org/visit/isaaclieser  Please think good thoughts and say some prayers for his family.
Margot
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Three Years
By Margot | January 19, 2008
January 19th, 2008Â
Today is the third anniversary of the day Sam was diagnosed. We have been fighting this beast for three years. If anyone had told me that we would be at this for three years when we were first diagnosed, I don’t think I could have stood it. Yet, here we are and what a journey. These three years have included the most raw emotional pain we could have ever imagined, yet they also taught us how precious good times and joy and laughter are and how precious our children are. They have taught us how brave one little boy can be. We have received amazing kindnesses from people and our friends and family have stood by us solidly through all three years. Thank you does not really say it.
 I’ve thought a lot these last three years about the quote from one of my all time favorite movies based on my all time favorite book, A River Runs Through It by Norman McLean. The quote is not in the book, it was changed a bit for the movie.  The younger brother, Paul, who is an amazing fisherman has just caught an enormous fish through sheer skill and tenacity and his brother upon witnessing it says the following:  “At that moment, I knew surely and clearly that I was witnessing perfection. My brother stood before us not on the bank of the Big Blackfoot River but suspended above the earth, free from all it’s laws like a work of art. And I knew just as surely and just as clearly that life is not a work of art and that the moment couldn’t last.” My “work of art” picture of Sam in my head is always that of him with his hands thrown up in victory after scoring a soccer goal or a basket in basketball with a huge smile on his face and joy radiating from his being. I want so much for him to have a million moments like that and I want for him to put that victory stamp on cancer.  But I have learned to appreciate the moments as we go. I appreciate my friends who laugh with me about some of the absurd things that come out of people’s mouths – like the time I was at a party and an older man said to me, “Is that Sam? I thought he was a goner. Nice to see the little fella.”  And the time a mouse jumped out of my mother’s purse in the parking lot of the grocery store and she ran screaming into the store talking about the Hanta Virus and her grandson with cancer scaring the crap out of all the people in the grocery store.  I couldn’t even get the story out, I was laughing so hard when I was telling it to Colleen and Cathy and my Dad. The odd thing is that the moments can happen even during the worst of times. So I try to remember them, to brand them into my brain, the feeling of Sam tackle-hugging me at school and watching him laugh until he can’t breathe - watching Andy explain something to me using all of his big gestures and wonderful expressions, watching Charlie dive bomb his brothers from the couch – watching and listen to Neil when he’s got a hold of an idea, watching all of them play football in the park together.
HVA/VMA is not back yet from Wednesday. LDH is 651 (stable). Andy’s birthday is quickly approaching. Neil will be in New York at the end of the month for a meeting that he and other parents have organized with parents, doctors and researchers coming up with new ideas for treatments to try in the lab. I’ll post some more details on it shortly. What they have organized is phenomenal.Â
Please think good thoughts and say some prayers for Austin Melgar and his familly.
Happy January 19.
MargotÂ
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Wohoo Chargers!
By Margot | January 14, 2008
Just had to do a quick Monday morning sports update. Hospital visit is on Wednesday so I’ll bring you back to the regularly scheduled program then.
How about those Chargers?!! Wohoo! We watched the game at the Savocas and it was mayhem with everyone screaming at the top of their lungs for most of the second half. All three Hutchison boys were wearing their LT jerseys and were very excited about the game. Oh, All right so Charlie didn’t exactly know what he was excited about in the first half and slept through the second half, but he looked the part. One of the Hutchison boys (see if you can guess who) was slightly fair-weather in that when the Colts scored the first touchdown he said, “That’s it! I’m rooting for the Colts.” He was firmly back in Charger camp by the end of the game though. All the experts had counted us out. Look out Patriots! Read the rest of this entry »
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VMA: 4.4 HVA 10.5
By Margot | January 10, 2008
 The VMA is down from 4.6 – I was wrong last week when I said it was 6 point something -that’s what I get for doing an update without the numbers handy. The HVA up from 9.5. We are more concerned with the VMA as the HVA can be due to different things in the diet. So, would I like to see numbers like we had in the summer in the twos and fours? Yes, yes, yes but as Sam is feeling good and in good spirits, I’ll take these numbers as a monitor closely sign. We don’t have scans again until February. We also measured C-reactive protein which was less than .3 (good), Vitamin D=3.1, Interluken 6=3.1, IGFBP=3.7, Tumor necrosis factor= 2.6 (normal), Vitamin B25 Hydrox less than 4, D3 is 44, Total D= 44, Fibrinogen 221, D Dimer= 582 For a thorough explanation of what all of those numbers may or may not mean, please see Neil.  I do know that most of them are good. Read the rest of this entry »
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Happy New Year!
By Margot | January 2, 2008
 We are back from New Mexico and I’m back from my progress report vacation.
The boys had a wonderful time in New Mexico. It was parka and snow boots kind of cold and there was snow on the ground much to the boys’ delight. We went sledding up at the ski hill which was a big hit but we had to go into the lodge for a big hot chocolate break because of the cold. We decided that it might be better for them to try skiing when it’s not so cold and Sam’s ankles are in better shape (Spring skiing maybe) so we don’t rent all the gear, get all heavy clothing on and buy the lift tickets only for the boys to take one run and head for the lodge. Wimpy wimpy California family, I know. Sam and Grandpa fed the horses together every morning while we were there and walked down the lane to get the paper and Sam, Andy and Charlie had a great time feeding apples carrots and sugar cubes to the little colt out in the field, Hale Bop. Charlie woke up every morning saying “Dog” and went to look for Coco, the old lab. Read the rest of this entry »
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December 20, 2007
By Margot | December 20, 2007
Only five more days until Christmas as Sammy so joyfully told me last night. The boys are doing well we are running around in a pre-Christmas rush. Sam had his Christmas music program this morning and was so cute dancing to all the songs. He had labs yesterday, I know it’s been a while since I’ve posted numbers. I don’t even have them back yet if you can believe it but I’ll post as soon as I get them. They’ve been pretty steady, the last few times. We brought chocolates in to all of the nurses and Sam wanted to hand them out but then he got a little shy. Since we gave them to all of the nurses, Sam was really concerned that the nurses who help him out all the time get their fair share and that we were giving a big enough box to Dr. Willert. Read the rest of this entry »
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December 15, 2007
By Margot | December 15, 2007
Our 15 minutes of fame. Sam and Neil are featured in the Wall Street Journal today:LINK TO ARTICLE I’ll update more soon. The boys and I are off to the park.
Margot
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December 7, 2007
By Margot | December 7, 2007
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December 4, 2007
By Margot | December 4, 2007
To Be Sung to the Tune of Jingle Bells:
I hate chemo, I hate chemo, I hate chemo all the way,
It’s no fun to give the pill,
that causes nausea every day!
I hate chemo, I hate chemo, I hate chemo all the way,
Sam’s tired and cranky, he feels like crap,
and his appetite’s gone away!
Dashing through the day,
in a silver mini-van,
it’s no fun to ride around,
when your stomach hurts, man oh man!
Repeat refrain Read the rest of this entry »
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November 28, 2007
By Margot | November 28, 2007
Ack! I’m a whole holiday behind. How did that happen? We had a wonderful Thanksgiving. Grandma Joan and Uncle Tommy and Cousin Abby and Uncle Matt were out and the boys got to go to SeaWorld, the Zoo and Legoland all in one week. We did the same kickball game on Thanksgiving morning with the Bonebrakes and the Garveys and all the other families that came last year. It really brought home to me how lucky we are. The difference in watching Sam play this year versus last year was enormous. Last year he was so thin, bald and tired looking – he bounced back into the hospital Thanksgiving night and that morning he looked lackluster. He played, because that’s what he does but we could all tell he was struggling. This year, in contrast, he had it going on. He played kickball two hours running the bases and kicking the ball. Then he came home and all of the kids played with the Monaco boys and cousin Abby nonstop all day. It’s a good thing we don’t have a girl in this family because the boys loved to torment cousin Abby.  She’s Andrew’s age and she and Andrew had some differences of opinion. A good example would be Andrew’s opinion of the late birthday present we got her, Island Princess Barbie, “Gross! That is a girl toy and I am not touching it.”  Read the rest of this entry »
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