Monday, April 20, 2009

April 20, 2009

Hi guys! I'd like to welcome the Jefferson Elementary Community. The flyer went home today, for the Blood/Marrow drive. There was mention of our situation in the school newsletter. This is not a one way conversation. If any of you have questions or comments, let me know. Nothing is sacred.

Today was another good day. I need to relish them. We don't have counts again, until Wednesday. I'd bet you money that they will be single digits. We should also have the results from his Bone Marrow Aspiration. I'm curious to discuss it under less stressful terms. The last one was nearly eight weeks ago and was for diagnosis. They also ran more genetics. Don't know what for, yet. Some earlier genetics testing revealed that he does have a marker for Noonan Syndrome. I'm not exactly sure what this means for Gregory, except there is a high rate of Noonan Syndrome and JMML. Gregory is such a rare case, that I think they are culling all the information they can. I just hope that it provides answers for later on down the line. 'Cause all childhood cancer needs to be learned from and advances made. I officially recieved my consent to "join" Gregory's case and the Children's Oncology Group.  In a nutshell, they research childhood cancer and use actual patient data.  Of course we will consent.  There's no doubt about that. 

I want to wish Ellie, Parker, Elliot, Ana, Aria and the rest of the warriors, peace, rest and play.  You are all at different stages, experiencing challenges and triumphs.  (Weight gain, Yay!)  I think of you all several times a day.  *fierce squeeze*, to you all.

Seeking advice:  Gregory has really been into dancing, mimiciking dance and singing.  I want to encourage this.  We have The Laurie Berkner Band.  I love it.  Not too childish, at least not in that baby-nursery-rhyme way.  I'm interested in video and music.  I know there are some hip folks, out there.  I think the Bare Naked Ladies did something.  Yes?  Any suggestions?

Later tater's.  Gotta jet. 

Todays thank you's:

Paula Gibson-Smith, Sharon Bowman, Gayle Waner, Claudia Start & Linda Bradley.  You five women are amazing.  As much as Montessori moves me, I do not have what it takes to do what you do.  Every day.  Every week.  Every month.  Every year.  You continue to inspire and move me.  I think of you now, because this is when it gets crazy, again.  Thinking about Camp Out and all that means.  Thanks, ladies.  We are all honored to have you in our lives. 

This is not a thank you, but a belated wish.  I completely spaced my parents wedding anniversary, last week.  I didn't even remember it late.  It was totally off my radar.  The big deal about this?  I may not outwardly acknowledge events like this, but I NEVER forget.  EVER.  So, Mom & Dad.  Happy Anniversary.  Who woulda thunk it?

Miss Marlene, we are doing OK.  Thanks for the offer.  I'll get back to Unity, on occasion.  It just takes alot out of me.  Thanks for being there. 

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