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.  

As if things are crazy enough

I will write more of the details of the appointment one day.

In order for my brain to heal

I am to not talk, not exert myself

physically,

and

truly sleep as much as possible.

Otherwise it will take longer to heal.

My frustrations hit a high the night before.

I punched a stud in the wall.

That way I did not have to fix drywall.

Barely slept 4 hours

and

had adrenaline filling my body in

anticipation.

I will go more into the feelings sometime.

We spent 4 hours there

and

talked to 7 different professionals.

*1^st Nurse took vitals.

*2^nd Nurse took meds (only one) and basic history

8Met with Neuro-oncologist Physician Assistant.

Tooks a migraine, tumor history, story.

Job list

and

did an eval.

*Confirmed I have

memory and speech deficits

especially when tired.

*Also, said exercise is great and perhaps

I can do it sooner.

*Then tested my heel to toe walk

and I couldn't do it.

I began to get teary eyed.

*He showed no judgement re: punching a wall.

He was nice.

*He also mentioned how unpredictable astrocytomas are

and

that they have a very high chance of coming back.

They may come back soon or in 20 years.

Then met with my Neuro-oncologist.

She had us explain what we know about astrocytomas.

She did not want to repeat what we know.

She is super nice.

*Then she showed us my pre-op and post-op MRI.

*What we learned that we did not know before

my tumor had 5 tentacles.

:(

Andrew and I could see them without any help.

:(

They were in my short term memory area

and

optic nerve.

*She confirmed to give my eye some time to heal

since it still gets blurry and then twitches around my head.

*If still there in a few weeks I have to meet a neuro-opthamologist.

*Also talked about post op MRI, we got to see the hole in my brain

it will get a little smaller but will be there forever.

MY PLAN:

*In 6 weeks I have another MRI. For the next year I will have MRI's every 2 months.

She will look for the tentacles coming back

or new spots.

*If new spots then may need more surgery depending on where a new one is.

*If the tentacles start growing I will immediately go on chemo.

*It is called Temodar.

It will be a pill I take at home at night.

Shouldn't need any blood transfusions.

Should have little to no side effects.

Shouldn't look sick.

*IF we make it 12 months with nothing

then the next year I will get MRI's every 3 months.

Then we met a neuro-psychologist.

She wants to meet with me in a few weeks

(after more healing)

and

will do a 2-3 hr evaluation

to get a baseline

of where I am at.

*I will then meet with her weekly

to be taught how to

compensate.

*She confirmed that prior to

tumor removal I was having

short term memory issues.

*She also asked about marriage/family therapist.

We both said, 'YES!'

We will get a call soon.

This is a hard thing to wrap your head around

and

we both had talked about

needing/wanting to talk

to someone about

everything

the night before.

Between this and all the stuff

starting to pop up with issues with

Sweet Bitty.

We then talk to a research person

and

signed up to give my information

to their research to follow

how everything goes.

Knowledge is power.

If this may help it is worth it.

Then we met with a Clinical Social Worker.

She took more information

to give to the Therapist.

She also took the Kids information

to talk about the Child Specialist

to help them all out.

At home they are having some trouble

she confirmed we are on the right

path and doing well

but that they are happy to guide us

in our hard areas

and

meet the Kids too.

So yes.

The extra details and more story like will come soon.

More details regarding the next steps with Logan will come soon

and

D is still not well either

and

we have learned new stuff with him.

As the Ped said, “If I had a magic wand I would use it on you Guys. This is a lot

of crazy stuff.”

Yup. She also offered to scream for me too if it did not hurt my head.

We like this one Ped she is awesome.

Countdown to the Duke Tumor Appointment

Less than 24 hours.

We don't totally know what to expect

about the appointment tomorrow

or

even how long it may last.

Yeah...I think I am going to bring

headphones to listen to music

to turn my brain off while

I wait.

I told Andrew so if he wants

to do the same

that way I don't leave him hanging.

We called the Ped again today

since L and D have had

bowel issues for over

10 days.

The Nurse told Andrew

that we are doing everything for them

perfectly

and

more.

That they are really impressed

and

if they still have it tomorrow

we need to take them into

sick hour in the morning.

He said, “We won't be able to make it.”

But we could do Tuesday.

So we will see what happens.

Yep.

Logan kept going all night

and

screaming.

I will stop the details here.

I have wanted to go back to Church for a long time.

After we started to have such a hard time

with Logan especially right after

his diagnosis

we stopped going.

I would take Aidan by myself

and

Andrew would stay with the Littles

but eventually

Andrew would work on the weekends

to help compensate for the therapy costs.

I was not willing to attempt taking

them all by myself.

If we ever had a date night on a Saturday

Andrew and I would head to Church

before dinner.

Yeah.

So I hoped we would try again now

I have some plans to hopefully help

the Boys.

BUT since Andrew and the 3 of them were sick last week

we did not go

and

I took care of all of them.

Today my Mom picked me up

and

took me.

You know since I can't still drive.

I felt too horrible yesterday for not ever resting.

I had to use a wedge again

because for some reason

some extra fluid has come back into my head. :(

I felt a little  tiny bit better this morning

but insisted on going to Church.

It was so nice to go back.

I was very overwhelmed to be back

and

super grateful.

The Homily was so appropriate too

for all we are going through.

Amazing.

I have missed it horribly.

But it was hard work to be there.

The entire Mass I could only hold my head to the left

it felt terrible if I was  holding my head upright.

My left eye would roll and twitch too.

By the end I had a horrible headache

and

nausea.

But I am so glad I went.

I have rested to make up for it.

I still don't feel great

but

it takes time.

I also held Logan last night.

He was so upset it was all I could do for him.

We need to see how much he weighs

when he was born

you felt like you held an empty blanket

with a baby head in it.

Last night I could feel his body

but feel minimal weight behind it.

We have gone waaaaay out of the way to find

food he eats to try and get him

to put some back on.

Hopefully next week everyone is well

so we can all go to Church

but until

he recovers we are not

taking him anywhere to

get other people's germs.

If we can help it.

Here's our Beautiful Birthday Boy!!

Hopefully we will get some good photos at the Family

Party next weekend.

He is loving today because

everything is so simple

a few presents he likes

and a basic schedule.

He is so happy.

Thank you Lord for giving him some time to enjoy it.

We are eternally grateful.

I am sure I won't sleep tonight

and

will be up by 4 am which you know

will give me plenty of time to get ready for my appointment.

We will keep everyone posted

but

Family will know first

especially if we found out anything.

Thank you everyone for your kind actions, thoughts and prayers.

We are so grateful.  

Buzz.buzz..where is he?!

2 days until my next appointment.

OK, well it's almost 9:30p on Saturday night

I guess it's more like 1.25 days.

Yeah.

Logan at 1:45a will be 4!!

Man.

He was one of the first big things

of our plans changing.

God knew it is what we needed.

He only was preparing us for all

we are currently 

and 

in the future will face.

Logan was God's plan.

We accepted it.

We knew there was a reason.

I see more of that now.

He showed us we needed to plan

our Kids closer than we thought we would.

That way we have our 3 right now

instead of right now being unable to try for

a third.

He knows.

I was put on bed rest at 36 weeks with Logan.

He stopped growing 

and 

so did my weight and belly.

My placenta lost a lot of blood flow

and

I was having low amniotic fluid.

I had 4 days of bed rest before I

went to Duke Perinatology.

I was warned I may not make it

through the weekend to that appointment.

But I did

.

At that appointment they sent us straight to the hospital.

They wouldn't let me go home to pick up my

bags.

They said someone else could bring them.

So yeah.

I panicked.

I was very over the top when I got there.

It took me a couple hours to really start to calm

a little.

We had one OB for 4 hours
 and
then there was the shift change

and

the OB who delivered Aidan came in.

He's pretty stinking awesome.

He told us that they thought Logan was 5 lb and about 5 oz

but said he could be a pound less or heavier

and

please don't hold it against them.

He then asked if we had a lap top.

He hopped on it

and

found a video.

He said since Aidan was an 8 lb baby

and

 that if Logan was as small as they thought

that the birth would be a little like this

Yeah.

I think Andrew laughed.

I kind of sat there.

I found it funny later.

So after a few hours later after 1am I asked

the nurse if I should switch sides

since they would rotate me every few minutes

after I had an epidural with Aidan.

She said, “Sure.”

So she helped move me.

Within 5 minutes I said, “Andrew, we need to buzz her I feel pressure.”

He buzzed her

she came right in to look

She said, “OH MY!”

I said, “I think he is coming out.”

She said, “Yes he is!”

She started buzzing the Special Care Nursery

who we needed in

and

buzzing Dr. D. Henderson

then

opening the door

yelling, “WHERE IS HE??!!”

I sat there holding onto the arm of the bed staring into nothing

and

focusing on my breathing

because I could feel all the pressure

and

him moving on his own.

She kept telling me don't push.

She kept fussing for him out the door

and

buzzing for him frequently.

He took a few minutes but walked in

and I said, “Thank God!”

He put on his scrub coat like thing

and

said, “OK you can push now.”
I said, “Thank God!”

and

I pushed not even half a push

and

small Bit fell on out.

Yeah.

Then I couldn't hold him

and

as our plan (which did not work with Aidan either)

for Andrew to cut the cord couldn't happen.

He went straight to Special Care.

They were concerned he wouldn't be able to breath

on his own.

He was pale but they decided it was because

Andrew and I are.

Then he got good APGAR scores

and

I finally got to hold him.

He screamed his lungs out.

Our little tiny

5lb 3oz 19 in

Sweet Precious Gift from God.

I got swarmed by Nurses.

They were afraid he wouldn't be able to feed

or

keep his oxygen up when in a car seat.

He proved everyone wrong.

We left the hospital

and

he was 4 lb 13oz.

He was perfect

just tiny!

He still is!

Can't believe 4 years have passed!

He's developmentally 2

but I don't care.

God wanted to make sure we had him.

He carried us through.

He helped us see how we needed

to redo our Family plan.

He truly continues to remind us to

be happy

and have Faith

with all these challenges we have faced

and

are still going to face.

He knows we will handle it

and

will remember he is guiding us through it all.

We are so Thankful he has given us

this chance

and

these challenges.

Bitty is doing a little better.

He's still not 100% well

but sure

hoping he finally gets there.

He's had two days of keeping his sugar well.

He is just a tad overwhelmed

he  spending a lot of time in his

therapy swing

which is what he does when

he needs the extra help

to try and get things organized.

He is also overstimulated

and

doing his stacking and balancing of blocks

on the edge of all counters and tables.

He is trying.

We got him to say he wants vanilla cupcakes.

Little Man will get them tomorrow

and

then again a new batch for his Family Birthday Party

when hopefully all the Boys are all 100% recovered.

Sure hope he is finally on the mend.

He has lost a good bit of weight

hoping it will come back soon.

So here are some photos we were playing with on the iPad today.

Logan loves mustaches

so we found a program to play with. 

Here's what Aidan chose to decorate for himself. 

Gotta make a goofy face. 

Nice right?!

Dear Lord,

I pray Logan can enjoy his birthday and get a break.

Thank you for our Sweet Little Men.

We appreciate these wonderful gifts you gave us.

Two posts in one day

The other day I did pretty well.

I did a few things for maybe 20 minutes

then sat on the couch for 4 hours.

I did not want to nap

because that messes with

my ability to sleep at night.

I type and mess on the blog

and

listen to music to try

and turn my thoughts off.

And then by the end of the night

I had enough energy to help straighten up for

about 20 minutes

and then was pretty much

ready for bed by 8p.

Yeah.

So here I am in the afternoon messing

on the iPad, my phone, iPod

or laptop.

I listen to Pandora

to music that I like to workout

or

run to.

This way I can almost feel like

I am moving to the music.

I don't like to dance unless

I get a good buzz on.

I think once all is said

and

done I am going to try

and

work through that.

Why not?!

Who cares what I look like?

If someone cares that's

their problem

not mine.

I may as well enjoy it.

Right?!

On a bad day I listen to the music

and

I act silly to Andrew
and
dance to him to the music.

Why not?!

It makes him laugh.

Then again the other day

after a shower

I was dancing in our bathroom

and

turned around

and

there he was.

I about fell over

and

laughed super hard.

A lot of it is rap-like music

a lot of the songs

say bad words

which still sometimes

pop out of my mouth,

they also say to shake your butt

or

stick it out

and

I just act goofy to it.

Why not?!

It's at least a coping mechanism for me

and

typically I use exercise or running.

I will get back to that.

I SO can't wait.

In the meantime I am trying to find something

to work with.

Aidan has loved singing

and

rhythm ever since he was 16 months.

He loves all sorts of music.

Adult (heh) and kids.

He also makes a lot of his own.

Logan has just started to sing.

Every so often he dances too.

:)

He favorite song to sing lately is the

ABC's and Stacy's Mom.

HAH.

D likes to sing too.

He will dance

and

sometimes join me

for about 10 seconds before he hides.

D sings all sorts of songs too.

I love it.

It makes me smile

and

laugh.

These Boys are wonderful.

Anyways, trying to find some ways for coping

and

a little annoyed I can't do much.

I will make up for it when I get better.

Trying to have patience and listen to what God

is trying to share with us.

Keeping the Faith and Hope

and

remembering to keep

my determination

and

butt kicking

ready for all the

challenges we are coming to face.

Here's a photo collage of me.
I was being stupid..yeah I am bored. 

The bottom left photo I circled where I still have some 

swelling. 

You have to really look at it. 

My face is just a tad unbalanced still. 

It will take well over a month for it to all go down. 

but yeah...

so the bottom right photo is the same photo

without a circle on it.

Never a dull moment...

Logan had a hard time waking yesterday morning

at almost 9am we went

to make him wake.

Not quite like his bad episode last July.

He seemed to get out of it.

He would request food then refuse to eat it.

By 5p he started getting odd.

He wouldn't sit up,

he stopped scripting,

his eyes started slowly

fluttering back into his head.

Yup.

I started smelling him.

Since last July when he couldn't wake

he had a horrible odor being released.

He did not smell but

was dancing

that crazy line.

He also became angry.

He would yell no

and

then his eyes roll in his head.

He loses his color

in his cheeks too.

This is all signs of hypoglycemia.

He would say “NO!”

When I asked if he was tired.

He would say, “NO!”

When I asked him to eat or drink.

He would kick, fight, scream

and

then instantly look like he was

falling asleep

but

not really.

I finally held him down

and

syringed 100% Gatorade to hopefully

raise his sugar.

We did not know how low it was

just could tell it was low.

We called a neighbor who is a diabetic

and

asked if we could use a few strips to monitor.

Well, by the time we saw them he was on the rise.

I went to the store and bought one too.

That way we can keep an eye on it

and

have the most info for the Doctors.

20 minutes after 2 tsp of Gatorade

and

he got a little pink back in his cheeks

and

could sit up
and
was in the 80's. 

He also started a little scripting.

He finally agreed to eat a banana

and

WHOA!

He perked right up.

We fought him and got him to eat some

pizza

and

he went to bed with his

blood sugar finally up to 95.

That way I could more comfortably

have a chance to sleep.

I talked to the Genetics Secretary today.

She said they will call back again.

They got all the ER paper work

and

I told her she needs to find out if I need to contact

our insurance since we should have heard now

what they may or may not cover

and

she is to call me back and tell me

what the Geneticist wants to do

for the next step.

She kept asking me if I wanted to schedule

I said, “What does the Doctor want?!”

I will be a thorn in anyone's side if need be.

Logan is still battling recovering illnesses

since December

and

with the issues they believe he has

follows this direction too.

I think I am going to call our insurance anyway

today to see what I can find out.

Also, if the Doctor has

more information

that may also help

persuade insurance to take care of more stuff.

If you read about hypoglycemia

you find out it also interferes with

developmental delays.

Also, something the Geneticist

told us will all over lap

and

we can help control

to help lessen some of his

Autism issues.

He woke up normally today.

Like normal 7am on the nose

talking perky

and

has been eating wonderfully today

which of course

helps keep the blood sugar level.

Whew.

Momma is a determined woman.

For my entire Family.

I will contact as many people as I need to

and

stay on top of them so they don't

forget about us.

It is my job.

I will do it for myself too

so I can maintain my

work for these Boys.

We are being guided for something.

I don't know what

but I know

God is guiding us

and

slowly letting us know

where we are to go

and

what we will do.

This I know,

trust

and

have Faith.

We will figure it out.

Thank you Lord for all the Guidance, Love and Help.

 

Here's the Bit today!!

Throat tightening but insisting on taking deep breaths

4 days until I go to my

consult at

The Preston Robert Tisch Brain Tumor Center

at

The Duke Cancer Center.

11 days until I turn 31

and

16 days until the

5K Angels Among Us

for raising money

for

The Brain Tumor Center.

Wow. Busy April.

Also 26 days before I go for my

post-op recheck with Dr. Grossi.

I have been skimming through

The Brain Tumor Center

website.

I am having a smidgen of a hard time.

I am now on “Step 4: The in-person consultation at our Center. “

They explain a little more

in general what they will do.

The also explain a few more steps.

I try to read them

and

my throat tightens while I read it.

It really feels like a coffee straw

when I try to read it out loud.

I REALLY want to go run.

I can't wait to do it.

I have tried to meditate some

but

so far I can't get the last little edge off.

Then again all has been crazy.

Baby D puked in his bed last night.

Yeah...7 days without vomit

and

then he hurled again.

We go into auto mode that he is sick.

He has yet to get sick since right before 11p last night.

He is also cutting molars

and

still will have issues with reflux.

So who knows maybe it was just

a bad run of it all.

He was kind of burpy

and

coughing

then gagged.

Really hope it was just one last annoying thing.

He has been OK since and super hungry.

He was mad though last night.

He screams at me to hold him

he screamed for 2 hours.

He screams at Andrew to not hold him.

Yeah.

I updated and put a little photo

on our

team page for Angels Among Us

Artie's Apocalypse

I tried to write a little but

my head doesn't want to

handle it right now.

So I compared the photo Andrew took

from the day after my surgery

to how

my hair looked after a shower last night.

That would be 3 weeks post operatively.

It's pretty amazing.

You can't even really notice!

Man..I don't know if Dr. Grossi will be at the 5K

but

if he is...

I am going to introduce him to all who are

on the team.

Seriously...

He is amazing, phenomenal

and

just flat out a Rock Star.

Seriously.

I hope to hear back from neuropathology soon.

If not Monday will be here crazy fast.

Trying to take a lot of slow deep breaths.