kevin's blog

Something a little odd and a little bothersome is happening with Aaron.
I know that after a cycle of his chemo therapy his counts, white blood, red blood, platelettes and so on, drop low, but it has never really manifested itself in a strange way until now.

Aaron has a minor bad habit, that when he gets angry he smacks his forhead with the palm of his hand. I know exactly where he picked it up. The show, Ed, Ed, and Eddy. Those kids on the show do it violently, and after watching it a few times Aaron and Christian both started doing it. That's also when they stopped being allowed to watch that show. Now Christian has stopped doing it but Dylan has picked it up.
Brandon really never did it much. He started to then stopped.

So when Aaron has a tantrum he smacks himself in the head. Not super hard but repeatedly. I hate it. It drives me crazy.
Well after one such episode last week he is getting a speckled bruise pattern in the middle of his forhead around where he smacks himself.
I intend to call his doctor and make sure it is nothing to worry about or to take him to the hospital over.
He also ended up with some long bruises where he got his back scratched. Back scratched like Mom itching his back, and the next day there are 4 long bruise lines where the fingers ran down his back. She did this to Christian too and he has no marks. I know she didn't scratch with any ferocity because all of us do that stuff. Little pinches and fake clawing, while we play. I am assuming that Aarons counts being low means he is going to bruise easier and so on.
He also has longer lasting and larger than normal bruising around the site of his tri-weekly blood draws to measure his counts.
And another couple of dent like bruises on his head, where he claims to have fallen down and bumped his head on a toy. Whether he fell or was doing something he shouldn't have, with the other boys is not my concern on this one.
Four boys ages 6 to 3 are going to rough-house and fight. We can stop it if we chain them up and take away their ability to move, but short of that action, fighting and rough-play will commence.
I just want to get better answers on whether or not this is like anemia, or if I should be worried about it.
I'll fill in later what they say.

I spent all day yesterday at the Red Horse training base, called Silver Flag. That is where civil engineers, and EOD personnel, and Firefighters do all sorts of training exercises and training on machinery.
So what did I get to see?
How about a bomb crater in the test runway, and the CE team who only took 3 hours to repair it. That was pretty cool. They have a very well drilled set up for the earth movers, dump trucks and other machinery. These things are gigantic, and they are literally, all moving within inches of each other at decent speeds, 35-40 mph, in this very tight pattern around the bomb crater. Fixing, filling, and clearing debris as fast as possible.
Then I went to the EOD firing range and got to see all manner of rocket launcher tubes land mines bombs grenades, a shoulder launched anti-tank missile, and tons and tons of cool looking deadly devices that I honestly don't know what the hell they were. But I loved looking at them.

Then I got to go watch the ROWPU which is the Reverse Osmosis Water Purification Unit, in action sucking up brown briny swamp water and converting it into clean drinking water.
No I didn't drink any.
Then we went to the fire dawgs rescue/recovery training where they had a little house and the fire dawgs where going into the house, full of smoke mind you, to find and bring out rescue dummies. The guys there were telling me it is like closing your eyes and wandering through a strange house looking for dead people. Then dragging them back out. They can't see anything. You could hear them falling down and banging into stuff, and there was a hallway with a Plexiglas wall so the instructors could see them carrying the dummies.
Then we went back to the test airfield and saw the fire science guys set a mock jet on fire to simulate a JP8 fire. We were literally 100 yards from this giant tornado of fire and black smoke and we rolled down the windows of the truck and instantly got blasted by waves of HOT air. You could feel it that far away! The skin on my face shrinking up and getting tight like it is afraid and it is trying to squeeze my skull to comfort itself. I know that sounds odd but I can't describe it any other way.
It was beautiful. Fire and thick black smoke dancing round and round with each other in swirls that lasted many seconds and a few times actual minutes. The thick smoke billowing out making the bright orange licks lf flame invisible for a time and then a rush of flame jumping out of the smoke, and back and forth it goes, with only sparse moments where the smoke and fire seem to want to share the same space.
I love fire, I love watching it. There is something rhythmic and primitive in fire that speaks to my soul. I don't know why. It just captures my interest completely whenever I see it.

I love this job. I get to nerd out all the time on stuff, and learn complex military systems, and just all the good old fashioned nerdy stuff I used to watch hours and hours of on that discovery channel show Brute Force.
It is great to have a job.
It is fortunate beyond measure to have a job you are truly inspired to do every day.

This is the first run of content I think would be cool for FWC.
This is of course all entertainment content. Nothing yet of the actual information pages for kids and adults.

Straight up games.

Blastoma Blaster.
Basic point and click shooter. Shooting Cancer cells and trying not to hit normal cells. Weapon upgrade from basic hypo needle to rotating multibarrel hypo with imuno-booster missile launcher that creates little white cells that work independently of player.
Bosses include tumors and infections.
Special weapon Radiation Cannon breaks up tumors.
Player can’t lose, when over run by opponents, “The Specialist

Rant Rant Rant I shall.
First Starbucks shall feel the heated blast of my contemptuous wrath full force.
YOU SUCK STARBUCKS!
I used to love them. The Mocha was a thing of beauty. That's when it was made with hot cocoa and expresso and milk. Now the starbucks mocha is made with SYRUP! Good lord it is revolting!
Maybe it's just the starbucks here in Panama City that is using chocolate syrup, but it is disgusting. Utterly putrid. pa-tooey!

Second Sprint!
If ever I wished I could kill people with MIND POWERS, it was yesterday when sprint interupted my cell service because they have not processed my check for the last cell bill. I (actually Tami) sent the check out with other bill checks, as she does regularly at bill time, and lo all of the other checks we sent out have been recieved and processed by those companies to whom they were sent.
See we know this as fact because we have online banking and we are both constantly checking the accounts. We know every cent the other spends, and it is nice. I check the bank at least once a day and I know she checks at least double as often as I do if not more.
All but sprint.
And this is the second time it happened.
The first time two weeks went by and sprint had not processed the check, so Tami tells me she is worried, and I agree, neither of us like the idea of a check free floating around without knowing who is trying to cash it and so on. So we call the bank, cancel the check, for which the bank charged us $20.00 and then we call sprint and tell them we cancelled the check cause we have to assume that it is lost in the mail. So we pay over the phone, and they charge us $5.00 just to pay them, not late fees mind you, just a "Hey pay us another fin just for the pleasure of paying us anyway".
So fine we bite the bullet, maybe we didn't put the bill in the right envelope maybe something bad happened to the mail guy, who knows.

So far we are down $25.00 in cash over this deal, and what happens the next week?
Sprint tries to run the check we expressly told them was cancelled. We gave them the check number, told them it was cancelled, and they said they made a note of it and would not blah blah blah. So then they try to charge us $25.00 to the next bill for a returned check fee.
OH here is the best part!!!
All the time I spent on the phone with Sprint counted against my damn plan minutes! Yeah, not only screwing me, but double stuffing me porno style.

Well this is the same shit they are trying to pull now.
They turned off the cell phone yesterday and I had to pay $30.00 to get it turned back on, and they say they have gotten no check.
WELL TOUGH SHIT SPRINT! You are waiting on this one you bastards.
And if you turn my phone off again I am seriously contacting the states attornies office and filing a complaint against you for purposefully mishandling payments so that you can force people into paying the extra $5.00 charge which is about %500 profit from one electronic fund transaction.
Neener Neener you gigantic multi-billion dollar telecom. Tremble before my empty threats. I DEMAND IT!

Yeah, I'm a goober.

I have just all kinds of exciting news this week.

First things first, Aaron and I just returned from Shands. I don't mind saying and I am sure other parents dealing with this feel the same, staying at the hospital for a week totally sucks. The place and people are great to be sure. It's just that I don't think I am a good traveler. I don't like being away from home. If I am with friends and family it is tolerable. Without those elements it is near to unbearable.
Of course Aaron was in good spirits, he had human slaves, uhm, I mean volunteers, to boss around and have cater to his every whim. I tried to put a stop to that as soon as possible, and instill some level of understanding in him that volunteers are not pets, they are not servants, and he has to appreciate that they are there to be with many children and help them to pass the time in a fun way.
It got to the point where he was demanding a new volunteer every time one had finished their shift. He got unreasonable in his demands as well telling them things like, "OK when I have lunch time you can just go stand in the hall by the door and when I want to play with you again I will yell at you." and "When you leave bring me a new volunteer, a girl one with dark hair, short, but not a boy."
It was actually deplorable, but because he is so sincere and sweet with his little lisp, you can't help but think it is cute, so everyone laughs and comments on how adorable he is BLAH BLAH BLAH.
They miss the point entirely that the child is taking away from this treatment a very bad lesson. That being cute and sweet will get him anything he wants, even when he is treating other people rather poorly.
So there were a couple tantrums thrown when I sent the volunteers away due to his lack of following the rules about volunteers and his responsibilities. Yes, he has responsibilities. He is five, and he has cancer but he still has rules and boundaries and a standard to live by so that he will be a good person when he is released from my custody at age 18. He has "Home responsibilities" and "Hospital responsibilities".
His home responsibilities are to clean up his toys, do what he is asked/told by adults, eat all this dinner, and try his best in his learning activities. Not an overwhelming amount of stuff for a kid his age.
His hospital responsibilities are even less in number, but slightly more important. He has to do what the nurses and doctors need him to do even if it is yuckee! And he is supposed to eat as much of his meals as he can to keep his weight up and his energy reserves high for when the chemo starts to beat him down a little. He also has to follow the rules about being nice and doing what he is asked/told.

I have a serious investment in his personal integrity. I have that in all the boys.
Dr. Hunger made a statement when we first got to Shands, that I loved and agreed with and was glad to hear. He said that the pampering and allowances made to a sick child need to be considered and controlled; otherwise you get to go home with a child who is cured of cancer but who is a total brat.
So was born Aarons naughty name of "Cancer Brat".
Whenever he gets too over the top and starts ranting and demanding I tell him he is being a cancer brat and that he wouldn't expect these same things if he were not in the hospital, so he shouldn't demand them just because he is in the hospital.
He gets positively manic when you call him cancer brat. He hates it. He knows that cancer brat means that he is not being nice and that people don't really want to be around a bratty demanding little kid. So Cancer Brat is something that makes him very defensive and usually puts him into a more agreeable frame of mind after a few minutes so that he won't be a cancer brat anymore.

So the trip was good, the information as of now is that all signs of cancer except for the neck are gone. He has to go into the third evaluation of his protocol and if everything looks ok with the scans and tests from that evaluation, then Aaron will only have one more round of chemo therapy and he will be done. He will be in full remission.

There are still things I want to talk to the doctors about of course. Tami's mom Candy spoke with a woman whose son had Burkett’s Lymphoma when he was six, and it went into remission, and several years later he was diagnosed with leukemia. Now this is significant to us because they told us several times that the only real difference between the lymphoma Aaron has and leukemia is the amount of cancer growth in the bone marrow.
Under 25% bone marrow involvement and they call it lymphoma and treat it with the protocols he is on now.
Over 25% bone marrow involvement and they call it leukemia and the treat protocols are completely different and longer, and more dangerous.

So this woman’s child started with Lymphoma, and after being in remission several years, still developed leukemia.
The doctors have not talked about these possibilities but I haven't really pressed them about it either. I think I am a little afraid they will confirm an amount of probability and in that case I could be purposefully avoiding asking about it. I don't want to think about him developing leukemia.
It's just not something I can let loose in my heart and mind right at this moment. I acknowledge it is there. Looming. As present as death and taxes, I'd just rather not grab it by the horns until it is inside my comfort zone. No use wrestling with things that are not coming right at you.

The other bit of news is that I am Head Coach of the Panama City Beach Astro's T-ball team. Brandon is on my team and in all I have 13 kids on my team.
Here is the fun part. I don't like baseball.
I have never really played baseball.
I know almost nothing about baseball other than my opinion that in sports terms it is too simple a game to get the attention it does. hehe.
BUT t-ball is not about winning. It is about fun and team work and I can certainly teach and foster those qualities with no problem.
I just have to figure out what a "romer" does and where he starts on the field when the game starts. I am pretty sure a shortstop is horizontal (or diagonally)between second and third base and vertically (or depth wise) between the centerfielder and second base. But I could be wrong.

I have a great little list of games worked up for FWC.org. Relatively simple executions, focused on treatment types and procedures. I'll have to talk to Q or John about setting up a section on the site so you guys can look over the game outlines and make comments/suggestions.
Well back to the real world.

Howdy Howdy,

I just want to start by saying that Fun With Cancer is going to be a place for kids and families who are dealing with their new life. Yes I count it as a new life. The changes are that big, and that drastic. It’s not easy, and the hardest thing to find after someone you love, especially a child, has been diagnosed with cancer is joy. But you need it. We all need it. Happiness not only improves healing, it keeps your soul healthy.
My son Aaron, who is turning five years old today, was diagnosed with Burkett’s Lymphoma on December 16’th 2004.
It was a devastating blow to us.
But, we are trying to have fun, enjoy our life, and take all the steps needed to get Aaron into recovery and back to his normal life.
It’s not easy, and sometimes the stress and frustration brings us to our knees. That’s just going to happen. We can try to minimize its impact, but it is still going to happen.
So that everything is clear, it is my full intent to make FunWithCancer.org a tax exempt non profit dedicated to helping children and their families keep a positive attitude and outlook on the new lives they have, trying to beat cancer.

I want to thank Quentin Baker and John Wilger, for making this website happen.
I just mentioned that I would like to do this and within a week they had it registered hosted and ready to go. You guys are the best.

FunWithCancer.org
Here is what I want to do, in the short form.

Through interactive media and games provide children with information and enjoyment that lets them have a greater understanding and thusly a greater level of control over living with and surviving cancer.

Provide tips and tools to children dealing with cancer that they can use to lessen the psychological emotional and physical hardships caused by cancer.

Provide information in a format children can understand. Lessons, or Shows, that engage them and speak to their needs and level of understanding.

Provide tips and tools to parents of children with cancer that can lessen the burdens they face in trying to live life through all of the extreme situations cancer treatments put them through with travel, financial, emotional, and social stresses.

Give younger (toddlers) children visual tools that work across the internet that they can use to communicate with each other and express themselves to other children who have cancer.

Thank you.
Check back soon. Changes will be made and we will get this sucker rollin.