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SeaWorld Camp This Week/Good News-Bad News

By Margot | August 18, 2008

tenniscamp.jpg

The boys at the end of tennis camp last week.Left to right: Beau,Andy, Grant,Sam,Mack

Sam and Andy loved tennis camp last week.  They came home every day excited about the all of the games they played (Jailbreak, something called Wolf and several others).  This week is their second camp of the summer, SeaWorld Camp.  Charlie and I dropped them off this morning and Mack and Grant and Beau will be there too so I hope they have fun.

Last week we got good VMA/HVA numbers VMA:7.7 HVA: 11.9.  Needless to say we were thrilled. 7.7 is almost normal apparently switching things up a bit helped out. Our ANC got down to 900 last week.  We do not want Sam have low white counts and though that’s not that low, it’s the lowest we’ve been in a while.   Sam gets very sick when he has no white counts.  He bounces back into the hospital every single time his counts get low. We did it through up front therapy and when he first relapsed-every two weeks on schedule, we’d spend a week to ten days in the hosptial waiting for his counts to come back.  We do not want him to have to go down that road again, especially since we want to stay on low dose long term.  It didn’t seem to matter if we keep him home in a bubble or let him go out.  We are tyring Israeli honey to keep counts up. Neil discovered it. We’ve heard good things about it and it’s a no brainer (except for the price), since it’s honey.    We got our first little two by two jar a few  months ago and the first morning I was going to give it to Sam, I fumbled the little glass jar and it shattered on the floor (it was if I’d just shattered a Tiffany vase)..  It’s funny now but not so much at the time.  We’d stopped giving it because Sam didn’t like it but since we got the 900 number, we’ve devised a sort of honey popsicle that Sam will eat.

 The other disturbing development last week is that there was blood in Sam’s urine.  Usually at the end of the day and at the very end of the urine stream.  According to my research on the Internet, the end of the day and the end of the urine stream indicates bladder and urethra, not kidneys.  We started hydrating Sam like crazy and it stopped for a couple of days and then it started again. We’ve taken a couple of days off chemo and haven’t seen it.  We did a urinalysis which was completely clear.  It’s an on again off again thing but obviously something we need to keep on top of.

 In terms of mood and energy, aside from the fact that there has been quite a lot of lip coming from he and his little brother lately, Sam has been in great spirits and came back from tennis camp last week saying that he wished I’d signed him up for the whole day.  We’re getting ready for school to start. We’ve been doing practice homework daily to get them ready and Andy has been working on tying his shoes.  Watching Andy nervous at camp today before his friends arrived brought home that his first day of kindergarten is coming up. It’s our family’s first first day of kindergarten, as Sam was in stem cell transplant on his official first day of kindergarten (though he did have his first day finally in March of that year). We let the boys each get new shoes for school this weekend and Sam picked out cool guy DC shoes.  They are black and white with a little red.  He asked the sales lady if they come with red laces.  I flinched but when she put them in, I must say they looked much better.  I don’t know where that kid gets his sense of style - must come from me (I’m sure you would have come to that conclusion had you seen me this morning dropping the kids off at SeaWorld camp ;-)).

Charlie has develped a great fake laugh. He even does the little sigh at the end.  All the boys have been Olympics crazed these past couple of weeks.  They love to watch diving for some reason (though honestly Sam will watch any sport that’s on even if everyone else thinks it’s a snore).  Charlie calls diving  “swimming falling.”  Though we’ve tried to tell Andy who our team is, he roots for whoever is ahead, which in diving tends to be the Chinese.

There are some exciting things coming up in NB research lately. I happen to live with an amazing man who has his finger on the pulse and keeps informing me of very promising things.  Dr. Sholler has some exciting things brewing in the lab and clinic.  Also,check out this artilce in Science Daily.  I’m always amazed at how many treatment leaps are made by surgeons:  http://www.sciencedaily.com/releases/2008/08/080815200208.htm

Margot 

 

Topics: Progress Reports | 2 Comments »

2 Responses to “SeaWorld Camp This Week/Good News-Bad News”

  1. Donna Ludwinski Says:
    August 19th, 2008 at 12:12 pm

    Hi Margot–I just LOVE the boy quotes. You will have a treasure load to read over the dinner table with their girl friends in a few years. Keep up the good work recording this journey…

    Sam is a mighty man! Continued health and strength!

    Always praying! Donna

  2. Melissa Kipp Says:
    August 20th, 2008 at 6:13 am

    Hi Hutchison family! I just wanted to say HI and glad to hear you guys are having such a great summer. I have been keeping up with the blog and think of you all often.
    Melissa Kipp