Blue Skies

Just got the call

I can breathe.

"No news is good news"

Its not something you say to a mama who's been told 

Her child has a 50% chance of having cancer.

Its not that type of situation.

I appreciate the positive comments

But I was feeling like I was losing my child

And myself before even being told the news.

But thank you.

Thank you for the comments

The sweet words and prayers. 

It means more than you will ever know.

After spending every day sweet talking the nurse

I finally lashed out.

When you're told

50% chance

You need good or bad news

NOW.

I firmly and aggressively 

Told the front desk

That I need a call.

Even if it was a call to say

"Hi..I got your message"

That's all I want.

I'm losing my mind.

Physically and mentally falling apart.

Roll your eyes

But until you've been there

You haven't a clue.

So the surgeon called me himself.

apologized for not calling soon enough.

Its complicated.

She JUST had surgery so the inflammation

Swelling and all that jazz is throwing them off.

But he spoke to the radiologist and they both feel

That it looks to be a

Neurofibroma

Which is a rare calcified tumor

That begins in the nerves.

Because she JUST had surgery

He wants to wait 4 weeks to perform surgery

To remove it.

These tumors grow back so

She will be looking at more surgery in the future.

In 4 weeks the swelling should have subsided enough for him

To see what's going on.

Most likely he will remove the center of it which

He stated was quite large

As well as surrounding tissue.

Also the tumor has now become part of her skin

So he will need to remove quite a bit of the

Skin and she will get either skin grafts or skin flaps depending 

On how much is removed. 

In two weeks we will have a preop and discuss different surgical options

As well as what the future holds.

I'm just sooooo glad its not as drastic as it could have been.

She is a brave girl and she is going to 

Get through this like a champ.

I feel like a huge weight is lifted. 

Thank you all again! 

Autopilot

That's the only way I can describe it

Autopilot

All day

And at night I'm sick.

My body hurts so badly

I can barely chew my food

Because I either feel sick to my stomach or my jaw hurts from tension.

Friday was the MRI.

It was supposed to be Thursday but the Dr

Called radiology and requested a 3t scan done.

One that Katy campus doesn't have.

So we got rescheduled for Friday in the med center.

Poor girl missed two days of school

And she couldn't eat all day.

She was so cranky.

I don't blame her 

So we get to the med center.

And make it to radiology.

We quickly get called back.

I almost lost it a few times. 

Things that were said.

It just puts you on edge and makes you start oover thinking

Everything was fine until they discovered she has metal

In her mouth.

A spacer.

Kailah lost a tooth too early

And has a spacer until she's old enough to let the big

Tooth grow in. 

Anyways it was cause for concern for the MRI

Because its metal and metal heats up in an MRI

So it was either give her anesthesia and risk 

Her mouth getting too hot

Or not put her to sleep and risk her freaking out in the MRI

So many nurses came and went

I was on edge.

I told the anesthesiologist

"Go with your gut. Do what YOU think is best"

They kept saying

"Youre here to scan a ganglion cyst right?

WHAT!? NO!!! we wouldnt be here if

It was a ganglion cyst!

Its a TUMOR!!

At that point i was just sick to my stomach.

They decided it would be best to let kailah

Sleep during the mri

An hour long they said.

One hour max.

She was so brave getting her iv.

Quite humorous actually.

Never cried.

Made silly faces. Lol

Then away they went at 2:22pm

An hour long. 

One hour they said.

3:22pm....

4:22pm....

Excuse me mam, whats the status of my daughter?

"Oh the doctor called and wanted more scans, it will be a bit longer

But shes doing good"

At that point i freaked out.

Every possible thing went through my mind.

More scans?

Is it bad?

Did he see something?

Why more scans?

My mom was there to keep me company.

She got me a coffee and muffin

But i honestly felt sick.

I was hungry but

Nauseated.

5:28pm...

"Mrs. Trevino...your daughter is out now"

I couldnt get up fast enough.

There she was

Sleeping so peaceful

The nurse kept talking

I wanted her to go away

When under stress 

I just like to be left alone.

I focused on kailah

Took about 10 minutes and she woke up.

grumpy gills

But she was good.

Quickly requested a cake pop

Thats my Jade.

(:

The nurse said dr will receive the results monday

So home we went.

To wait the weekend.

Monday is here.

I called the office to see if i can get in tomorrow to 

Discuss results

BuT the lady said next appointment isn't until late

January.

I went off. 

NO!

I MUST COME IN THIS WEEK.

she reassured me that 

The Dr will call me when the results

Come in.

So once he reviews them he will 

Call me. 

So now I wait.

On autopilot.

Moving

Keeping busy

Crying randomly

Then going about life again as usual

I know people say

"I'm sure she'll be okay"

But you don't understand

Nothing has been okay

Everything keeps going bad.

I know thinking positive will be best

But I also have to be prepared

And being prepared is also 

Reality.

It hits hard.

What if it is bad?

What then?

I'm having faith its all okay.

that its just a calcified tumor.

There's the 50/50 chance.

But I'm just sick to my stomach

Not knowing.

And I'm nervous to know.

It will be a huge relief if it is just

A calcified tumor.

It still means more surgery because

It has to come out.

But its better than the alternative.

Just send some happy thoughts

And prayers that

We get answers SOON

and that they're GOOD results.

I can't thank you all enough. 

Xoxo

somewhere over the rainbow

I held it together

The biggest lump in my throat

My eyes watered and I assured the nurse it was allergies

She's a mom

She knew I was lying

Ganglion cyst

That's what we were told a year ago

No big deal just monitor it

OK

My gut said something was off

Spring went by

 summer was a whirlwind

This cyst had grown

And by august kailah complained quite often

That it was hurting

I want a second opinion I told her pedi. 

So to Dr. hartin we went to get another opinion.

He's a hand surgeon

Great guy and good with kids

Hmmm

He repeated

Looks ganglion but there's a slight chance its not

Its just

So different 

He said

But let's get it out!

So we scheduled outpatient surgery for the following week.

Easy in and out surgery to remove a common 

Ganglion cyst.

Surgery day came

She was so brave

She entertained everyone by performing Frozen lyrics

There were kids everywhere

Zooming around between the legs of the nurses

Some you knew had cancer as their ports were shown 

And their sweet little heads were bald

my heart ached

Palms were sweaty

Ganglion cyst

Thats it

Just a simple cyst

And we go home

She kissed me bye and they walked her to the OR

30 minute surgery

I sat in the waiting room

Watching as nurses came in and relieved anxious parents

2 hours later

Her dr came to me with a worried look

"Its not ganglion, its a tumor...and i honestly dont know if its mlignant or not but its not good"

I didnt cry

I just shook my head trying to listen as other parents stared at me

I wanted to run

Run to my baby

I want to see her now. Right now. This second. Give her to me.

its supposed to be ganglion

This whole time 

This whole damn year

Its supposed to be ganglion

I wanted to laah out and scream

But that lump in my throat

It just sat there stuck

For what seemed like eternity

I got my girl

And ananesthesia was rough

She vomited often in the car and at home

She fell asleep and i sat in the parking lot at ashley furniture

Crying. Just letting that lump go away.

A week went by

I impatiently waited for pathology results

But then her incincision got ugly

It wasn't healing right

Rejected stitches and got infected

So we went in to get it fixed up

Path results were in

He said

"Its a very rare tumor. Its a type of calcifying tumor that regrows after so long but its benign"

Sigh of relief

"But...I want to refer her to another surgeon...he can further evaluate and confirm results as well as see where to go from here"

So we scheduled with another surgeon.

Today was our first day to see the new surgeon. 

Again

I went in thinking 

Ok

Benign tumor needs removing or he will want to just monitor it

No biggie its benign

And in a matter of minutes that dang lump

In my throat was back.

"Xrays

We need xrays right now

Can you fill out these forms?

How is she with anesthesia?

Does she always look like this?

Theres a difference between skinny and frail.

Shes frail.

Does she gain weight?

So for the last two years shes always looked 

Like this? 

She looks sick and frail

Too often these tumors are diagnosed benign but they arent

Sarcoma can hide in the middle

I need to know 100% that this isnt cancer

Her xrays show something i dont like

I need to see more.

Mri immediately

Is she tired lately?

Cranky?

Sick at all?

The tumor hurts?

It grew over summer? 

Do you mind if i take a picture of her hand with my cell phone and 

Send it to another surgeon?

I want him to see this. 

If it is indeed just a calcifying tumor

We will remove it. 

If its sarcoma...

We get aggressive and get oncology on board

Because its ugly and its not good. 

Lets get this mri immediately

And go from there. "

I was like a deer in headlights

If i could put my babies back in my womb, 

I would. 

This is NOT what i expected. 

Im trying to be positive

But i also want to be prepared

Its exhausting being told

Its "no big deal" but it continues

To hit like bricks. 

Tomorrow she will miss more school

And get an mri

And then...

I dont even know. 

Im so lost.

Confused

Distraught

Still trying to let it sink in

I stay busy

If im not busy

I cry

I know it will be okay.

I know she will be okay

I want her to be okay.

So thats the update.

Please pray for my girl. 

Shes super brave.

Shes not excited about the mri or

More surgery.

She doesnt understand whts going on

But she knows her hand needs fixing.

So kinda send some happy thoughts our way

Tomorrow as we get her the mri.