T-Ball and Cancer Therapy

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.