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Halloween/Halloweden

By Margot | October 28, 2008

First of all, I have been very remiss in not reporting on our website about HallowEden and event that the Brunskows are put together for Halloween to honor their beautiful Eden.  Volunteers dyed their hair orange (Eden’s favorite color) for Halloween to raise money for MagicWater.  Here is a link to the story on the front page of yesterday’s Orange County Register: http://www.ocregister.com/articles/eden-cancers-event-2203872-halloween-sunday   They’ve raised close to $30,000.   Awesome.

The boys are counting down to Halloween and are very excited for their school carnival on Friday and Trick or Treating.  Sam woke up this morning and said “Only three more days until Halloween.”   My dad and Stephanie are coming in to town tomorrow and will be here for all of the festivities.  We can’t wait to see them. Yesterday after I told Sam that Grandpa would love to help him with his night sky log for his homework, he’s learning about the moon, the sun, the planets, etc. and he loves it.  He keeps filling me in on all the facts he’s learning.    Anyway, I told him Grandpa is a scientist and knows a lot about space. Andrew said, “What is this Grandpa, Grandpa Grandpa?  Does, he know everything? Yesterday you told us he was a good at yo yos” (the boys bought a yo yo when we were out the other day to get ref. shirts for Neil and me).   Sam also told me yesterday, “Mom, I like reading and writing now.”  Be still, this readaholic mother’s heart and thank you vision therapy.

Charlie and I have been going for a run in the mornings after we drop the boys off at school.  When I took the other two boys in the jogging stroller when they were little, they were always letting me know they were ready to get out five minutes into the run, but Charlie is so mellow. We comment on all of the birds and trash trucks we see and then when we get to the beach we sit on a bench and watch the surfers and Charlie waves at the birds and says, “Hi birds. Oh, they didn’t wave at me.”   It’s been beautiful weather here in the early morning – though hot in the afternoons.  I figure we might as well make something good come of the fact that the boys have to be at school at the insane hour of 7:35.  Anyway, running helps clear my head and stave off panic attacks regarding Sam’s numbers.   He and I did a blood check yesterday after school and Andrew had a playdate. We threw the football in the clinic while we waited.   His numbers are below.   We know HVA/VMA might go up because we hadn’t taken him off Etoposide yesterday.  At least VMA didn’t go up too much:

HVA = 15.1 (expletive here)

VMA = 9.5

WB: 5.5

HM= 11.8

ANC= 2,940

PLT = 282 

LDH = 788

AST=48

ALT= 23

ALK/PHOS (following for his ankles)= 187 (on the low normal range).

Neil and Pat Lacey are in New York meeting with, Meryl,  Dr. Sholler and some docs from MSKCC working on MagicWater stuff.   Neil gets home tomorrow.   There are some exciting things happening on the research front and I just want it to go faster.  I yell at my computer screen (probably the way some people are yelling at their TV screens about politics these days) over NB Google alerts, about some new promising treatment and then in the summary always the CYA statement that whatever it is still has to go through much more testing before it will get into actual people.  Thank goodness for Dr. Sholler and her work and her sense of urgency.

Have a Happy Halloween/Halloweden!   I will post pictures of our football team as soon as I have them.

Margot

 

 

 

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