From Twitter 04-29-2011

Today I am grateful for these words: Our youngest is a Childhood Cancer Survivor.
The crappiest thing about being sick: Cooking a turkey and NOT BEING ABLE TO SMELL IT!

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From Twitter 04-29-2011

I just became the mayor of Marycliff Center on @foursquare! http://4sq.com/ibok4I
Counseling. Missed last week due to fever watch. (@ Marycliff Center) http://4sq.com/jdD9bI

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From Twitter 04-28-2011

Today I am grateful that this hospital visit is "routine maintenance". IVIgG (@ Sacred Heart Childrens Hospital) http://4sq.com/kKsnLW

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From Twitter 04-27-2011

I don't like bobbles......... tell me why. I don't like bobbles.

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From Twitter 04-27-2011

It's kinda frustrating to be nearly 2 yrs post transplant and G has a WBC of 1.9. Not liking GVH today. IVIgG tomorrow.

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From Twitter 04-26-2011

On our way to clinic 'n labs. I completely spaced on putting Emla on G!

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From Twitter 04-26-2011

Argh! Gregory needed TPA! Going to be here awhile! (@ Sacred Heart Childrens Hospital) http://4sq.com/hWtZDO

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From Twitter 04-25-2011

There's something about Peanut Butter and chocolate. #fb
Listening to Gregory's croupy cough, flinching every time. #fb
We have Chicken Pox at C & A's school. Gregory will not be setting foot within it's walls for a while! #fb
I just saw a banana on a skate board. Immediately thought of Parker. #fb
It's time for Gregory's first pair of blue jeans. #fb

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From Twitter 04-24-2011

I need a makeup intervention. #fb

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From Twitter 04-24-2011

"Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and...

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From Twitter 04-23-2011

Gregory calls them PaGeeJays. (Pajamas)
In case you missed it. I need your help. #childhoodcancer http://www.mindithemagnificent.com/2011/04/i-need-your-help.html
We are at Hamblen Park! Easter Egg Hunt for ALL the OffSpring! First time in 2 yrs for G. #fb

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From Twitter 04-23-2011

In case you missed it. I need your help. #childhoodcancer http://www.mindithemagnificent.com/2011/04/i-need-your-help.html
Taking a moment of solitude and breathing. (@ Starbucks) http://4sq.com/faBVbT
*squee* Momcologist Luncheon! (@ Flour Mill) http://4sq.com/fRTq6g

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From Twitter 04-22-2011

Trying not to jinx myself, but we are still home and temp is down! (@ HomeHome) http://4sq.com/ho3qjD

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From Twitter 04-21-2011

Ugh. It's time to change Gregory's G Tube. #fb
Woo hoo! Successful G Tube change with minimal trauma! #fb
The sound of Rick Steve's voice makes me clench. #fb

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From Twitter 04-21-2011

Gift cards ROCK! An after school treat. (@ Coldstone Creamery) http://4sq.com/eyk91z

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From Twitter 04-20-2011

If nudity were an acceptable option, I WOULDN'T HAVE TO DO LAUNDRY! #fb
Detour signs = Spring in Spokane. #fb
Gregory thinks my 'real' name is MindiTheMagnificent. *snicker* #fb
The RX's I picked up today for G, 3 of his 12, retail at $ 2,600. Thank the gods we are well insured. Oh yeah, that's for 30 days. #fb

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From Twitter 04-20-2011

More prescriptions! (@ Sacred Heart Medical Center w/ 2 others) http://4sq.com/gQDPk7

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From Twitter 04-19-2011

All things considered, we are so lucky. It's the only explanation. Luck of the twisted draw. In a strange way, i'm grateful for this. #fb
The Bloomies will be out soon! Who's participating this year? #fb
I kicked off my @46momma campaign. I NEED YOUR HELP! http://www.mindithemagnificent.com/2011/04/i-need-your-help.html #childhoodcancer

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From Twitter 04-19-2011

I heart this school. (@ Plum Tree) http://4sq.com/hpD8Fs
I kicked off my @46momma campaign. I NEED YOUR HELP! http://www.mindithemagnificent.com/2011/04/i-need-your-help.html #childhoodcancer

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From Twitter 04-18-2011

I dared to put away my winter mittens, scarves and hats today. Sorry for the snow. #fb
@joyfuljennyb I wish I could! I'm fundraising on my own Noggin this year! Good luck! www.46mommas.com/mindifinch
Meat loaf. Homemade scalloped potatoes. Streamed broccoli. I feel accomplished. For that I am grateful. #fb
I am an Oven cooker. I suck at Stove Top. Give me an oven and I'm golden. #fb
You know you're old when you have to explain to your fairly young OffSpring, what a Speak 'n Spell is. #fb
The Emperor of all Maladies, Siddhartha Mukherjee '11 Non-Fiction Pulitzer Prize http://ow.ly/4D2ls The Story Behind Cancer #childhoodcancer

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From Twitter 04-18-2011

Picking up prescriptions! (@ Albertsons) http://4sq.com/fX8ILv
I am looking for Childhood Cancer bloggers. Not cb/cp. Bloggers. Can you drop me your web address?
@monicamfochtman I have one. www.mindithemagnificent.com Cp/cb are great tools, but they don't offer the flexibility/traffic I wanted.
The Emperor of all Maladies, Siddhartha Mukherjee '11 Non-Fiction Pulitzer Prize http://ow.ly/4D2pg The Story Behind Cancer #childhoodcancer
".......convert cancer to a chronic disease." Doesn't sound very splashy, does it. Yet, that is what we are facing.

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From Twitter 04-17-2011

All we can do is keep breathing. #fb
Once an @accoorg family, always an @accoorg family. For that, I am grateful, today. #fb

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From Twitter 04-16-2011

How did you discover that Gregory had cancer? Were th… — This is a common question. I wish there was an answer … http://4ms.me/f9wWOx
First, YOU are amazing and the strength that you have … — Thank you. *curtsy* Yet, we all have it in us. Yes. Yo… http://4ms.me/edYHH9
It's time for a haircut when G asks for the scissors. *sigh* "It's getting the way of me being handsome." #fb
Chicken fried steak is easier than I expected. Although, my arteries are hardening just watching it cook. I won't be eating THAT. #fb
Chicken fried steak was mediocre. Not enough Chicken Fried. #fb
The Best Explanation Of What's Really Going On With The Deficit http://bit.ly/h3RZYL via @moveon

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First, YOU are amazing and the strength that you have ever day truly amazes me. When will Gregory completely be out of the woods for relapse? I am addicted to the blog and have you guys in my thoughts so much it makes me feel intrusive at times.

Thank you. *curtsy* Yet, we all have it in us. Yes. You do.
This is a complicated question. I hate to jinx myself, but from everything that I've learned, Gregory's risk of his JMML returning is very small. *crosses fingers*
In the world we live in, Gregory is not cured or in remission. He has No Evidence of Disease. He now has bone marrow from another person. If his marrow were to begin working again, the disease would return. JMML is hardwired into the DNA of his marrow. His bone marrow transplant included hard core chemo that fully destroyed every last drop of his marrow.
In terms of his marrow there are two things that haunt me. Three of the chemos he received cause cancer. Which for Gregory would be called a secondary cancer. Myelodysplastic Syndrome (MDS & AML. The other concern is his new marrow just not working. Should this happen, he would need a new transplant.
While these are scary side effects, they are pretty low on my list of worries. They are big and if they happen, we just deal with it. We had a scare in January of '10, thinking that he was developing a secondary cancer. That experience taught me that worrying about this does me no good.
It's the chronic day-in, day-out stuff that wears me out.

Ask me anything

How did you discover that Gregory had cancer? Were there any signs that you brushed off in the beginning?

This is a common question. I wish there was an answer that pointed directly to "This is what to look for.".
Gregory is the youngest of three OffSpring. Before diagnosis, he had lots of colds and would spike a fever with every illness. Something I gave very little thought to. I just figured since he had two school age siblings, he was just being exposed to more illnesses than the previous two. He also had a run in with Rotovirus when he was 20 months old. Which landed him in the hospital for five days with dehydration.
Looking back, we could have looked at his blood work from then and been more critical. Gregory's leukemia (JMML) does not present like other leukemia's. It's subtle and has a slow burn. His labs from then might have given an indication of what was brewing, but they probably just looked like he was fighting something viral. Which he was. *shrug*
In February of 2009, Gregory had a head cold. Nothing out of the ordinary for him. He had had a juicy cough for about 10 days. At the time I was still working and my mom had him. He had fallen asleep in her lap and suddenly woke up with dry heaves. After our Rotavirus experience, recognizing dehydration was easy. I took him to the pediatrician. Nasal swabs indicated to Strep or Flu. He just look bad. We went to the ER for IV fluids. Typically kids perk up after IV fluids. Gregory did not. The ER doc ordered labs.
His labs indicated either a viral blood infection or leukemia. Like mentioned above, JMML is very hard to recognize.
We were admitted to figure out what was going on. More blood testing, a ton of nasal swabs and everything was coming back negative.
Two days later he had a bone marrow aspirate and this is what led us to the diagnosis of leukemia. Not the kind of leukemia, just a leukemia. JMML took several weeks to figure out.
Probably covered too much, but this is his experience.

Ask me anything

From Twitter 04-15-2011

I really need to post a picture of the back of my car. I get a kick out of watching people check out my "Flair". #fb
Today I am grateful that my Eldest OffSpring is home from his sixth grade trip. I missed that kid.

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From Twitter 04-15-2011

Patiently waiting for my Eldest OffSpring to return from his 6th Grade trip to WSU! Missed him! http://4sq.com/fIoBAV

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From Twitter 04-14-2011

I'm cold, have a sinus cold, sore throat, pink eye, so tired...... first time in two years I've felt this run down. #fb
Gregory: "Mommy what are these again?" Me: "Nipples." Gregory: "I love my nipples." #fb
Today I am grateful for the openess with which my OffSpring share their LOVE! #fb

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From Twitter 04-13-2011

Today's breakfast conversation is about fossil fuels. Why they should be expensive & how they are retrieved/made. #fb
Trying something new. Bare w/me. Today I am grateful that I got to buy THREE Christmas ornaments, this last year. Instead on only two. #fb
Cannot figure out why I never explored Grateful Dead. *shakes head* All those wasted years. #fb
2010 Summary, Where does the money go? Thank you @PAC_2 #childhoodcancer...
"Can't you read his body language?" #fb

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From Twitter 04-13-2011

2010 Summary, Where does the money go? Thank you @PAC_2 #childhoodcancer...
Picking up the Rugrats! (@ Jefferson Elementary) http://4sq.com/hJxPIe
Once again! (@ Center For Family Development) http://4sq.com/dGOzd5

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From Twitter 04-12-2011

Reminded Curtis to shower on his overnight field trip this week. Typical Aspie response: "Mom, it's not on the itinerary." #fb
Inconsiderate people in school zones stoke my ire! #fb
Wanna know how small Spokane is? I went to Junior High with my new counselor! #fb It's totally good.

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From Twitter 04-12-2011

Here I go. Done with free falling. Gettin' a parachute. (@ Marycliff Center) http://4sq.com/eIFqGI

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From Twitter 04-11-2011

From Blood Journal. JMML & PTPN11. http://bloodjournal.hematologylibrary.org/content/early/2010/07/22/blood-2010-01-265652.short
Am I the only one who's kid goes crazy when prednisone is TAPERED? Dropped another mg today and he's wearing me out! #childhoodcancer

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From Twitter 04-11-2011

@LTYMshow No problem. mindithemagnificent@gmail.com I'd be happy to connect with her! THANK YOU!
"Quit screwing around!" Never thought I'd repeat that as much as I do. #fb
Appt w/new counselor tomorrow. Check. Reflexology appt for 4/22. Check. Taking action 4 mental health. Check. Thank you, my friends. I <3 U!
Teaching my daughter how to wash dishes. She thinks it's fun! *squee* #fb
Yogi tea. How I love thee. #fb
RT @bumblebar: RT by midnight PST to be entered to win a box of Bumblebar Jr. drawing tomorrow. #win #organic

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From Twitter 04-10-2011

I REALLY need to finish importing all my entries to blogger. I'm up to transplant. *sigh* http://www.mindithemagnificent.com/
Coffee with the loverly Ms Jessica. *sigh* (@ Rocket Bakery) http://4sq.com/frHllC
I have blog bling! Woo hoo! http://www.mindithemagnificent.com/2011/04/i-have-blog-bling.html Thank you @LTYMshow #ltym

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From Twitter 04-10-2011

I REALLY need to finish importing all my entries to blogger. I'm up to transplant. *sigh* http://www.mindithemagnificent.com/
I have blog bling! Woo hoo! http://www.mindithemagnificent.com/2011/04/i-have-blog-bling.html Thank you @LTYMshow #ltym

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