Boys Details and Tumor Neuropathology Gist

There is so much going on.

My frustration is building again.

Ugh.

4 weeks and 1 day post op.

Getting to wean down on my anti-seizure med.

Yay!!

Had to take Logan and D to the Doctor on Tuesday.

We were supposed to Monday

but obviously the Tumor Center

trumped that.

Monday night was another night of

Logan screaming as he pooped all night

and

D too.

Which they were at the point their

backsides were so incredibly raw

you can't wipe them

and

we had to rinse them.

So they wake screaming

and

then scream more while

they get a middle of the night

rinsing

then

scream because you have to cream their raw

backsides to hopefully

slow down and perhaps

heals the soreness.

Yeah. I am not supposed to hold them

but did anyways

I again would sway and cry with them.

What else is left?

You know?

So into sick hours we went.

Logan is smaller to begin with

he is down to 27 lbs.

His 18 months shorts/pants fall completely

off of him.

The Dr. started with him.

She walked in the room looked at us

and

was like..I remember you Guys!

How are you?! (to me)

So we did a quick overview.

Then we talked about Bitty

*she was also the Dr. on call over

Easter who told us

he really needed to go to Duke

if he had more emergency issues again. *

Yeah.

We did not go far

and

she said....
OH MAN...I remember him!

Yes....soooooooooo

we recapped what happened after we

called the Genetics office.

She asked when we were going to bring

him in for his well child check up

and

said they will talk

about his weight issue then.

Heh...

She also mentioned with the

virus it can damage your villi

in your intestines

and

cause you to be

lactose intolerant

and

sensitive to fructose.

Luckily, I am a picky about avoiding

corn syrup

and a lot anything that has manufactured

unnecessary stuff in it.

Sooo, we realized he would get a

bit of dairy here and there.

Whoops.

We have a crazy diaper rash cream we have to make

to help heal his behind.

Equal parts

zinc oxide cream, hyrdrocortisone and

lotrimin.

Yeah...

After 3 days we will stop the cortisone

and use the

zinc oxide and lotrimin until the behind heals.

Polysporin on all open sores.

So we moved onto Baby D.

He doesn't drink dairy (any way)

but can tolerate

2 oz of yogurt at a time

overall

he gets enriched rice milk or coconut milk.

Then she saw how terrible his back side looked

and

noticed his eczema that his

steroid cream was not helping.

Well, because it is ring worm.

EUW!!

I said, “Are you sure?!”

“Because if it is we ALLLLL would have it. “

Apparently, people who are prone to eczema

are prone to getting a type of ring worm

that no one else but people like them get.

Yeah...so lotrimin or a script...

We opted for lotrimin

so for 14-20 days

twice a day

and then after it heals

continue it for 2-3 days

then stop.

Yeah.

She said she would scream for me

but was afraid it would hurt my head.

She said, “You guys need a break!!

This is crazy!!”

Yeah.

It is.

After leaving the Doctor's office I called

to see how Aidan's school drop off went.

And while talking to my Mom

Duke called.

I got the number and called back right away.

It was a nice man calling to tell me

that our Insurance said they would cover the

human genome exome testing.

Which is one of the newest most helpful

informational testing done.

Thank you Lord.

He told me now I could call the Geneticist

and

schedule the appointment.

I tried..

Finally got the call this afternoon.

April 25

Logan, Andrew and I

will be tested.

Whoa...

I got an update on my tumor testing...

I finally got a call back this afternoon on that

also. 

They had me ask my questions

and

 then they answered.

It is called a “Well-Differeniated Astrocytoma” (WHO-Grade II), recurrent. (WHAT?)

It had some reactive stains that are “typical” with it.

I have a positive Ki-67 at less than 1%.

This is a cancer protein BUT if you have to have it

it is the smallest level possible!

AND
they said typical enough

with what I have.

They also added a comment that said, it looks also like a

oilgodendroglioma.

Right now, they said it will not cause them any more worries

and 

are pretty much what they expect.

They won't change their plan right now

and

so we'll see what is going on when I go see them again on May 20.

They really did not say much 

and

tried to see what I would ask.

Soo..that kind of gives me a funny feeling.

But I get they want me to stay calm

and

just recover.

So I will try.

However, I think

once the bruise on my hand heals

I will probably

punch another wall

unless I can run.

PLEASE I WANT TO RUN.