Hershey Neurosurgeon Visit 1

Funny, according to everyone else, I got "great news" today.

Yes, I'm not dying.

Yes, my tumor is operable.

Yes, it's pushing on important parts of the brain, but not too badly.

Yes, my tumor is not causing me major symptoms.

But, yes, I still need to have my skull cut open, my brain manipulated to the side and a tumor cut from my brain... all the while not injuring any of the facial/cranial/optic nerves that it is growing around.

Hm...

I'm too exhausted.  Too exhausted. Too exhausted to type.  Maybe too exhausted to realize how good this is?!?  Maybe too exhausted to be utterly thankful that it's not life threatening.  Jason says it's a lot like prepping yourself for a big fight... that just doesn't happen.  Your adrenaline is up and it will take time to level out.  I hope.  

I'll go back to Hershey in February for a hearing test, detailed MRI and re-consultation.  If there is no no growth, I can continue to wait or I can schedule surgery.  If there is any growth, I must schedule surgery.

Is it weird that i just want them to cut it out of me and be done with it?!?  I want it GONE.

But, after a good nights sleep, I may wake saying that I want to sit and watch it for the next 5 years.  That's a benefit to being a girl... I'm allowed to change my mind as much as I want!

I am waiting to hear from the U of Penn to see when my second opinion will be.  I'm praying they give me the same info.  Otherwise, my brain (and tumor) may literally explode!

I'm thankful that it is not emergent.  I'm thankful - so thankful- that it is not cancerous.  I'm thankful that this can be handled at Hershey, and I don't have to drive to a big city.  I'm thankful that I have health insurance.  I'm thankful that I'm not dying - VERY THANKFUL. But I'd be lying if I dod't say that I'm a little bitter, even a little "ungrateful" for the "good" news.

 Who wouldn't be...

                                        right?

Suprapubic Catheter Surgery #2

Jackson has surpassed any expectations that his Urologists have given him, in terms of continence and bladder control.  He's been 18 months-free of UTIs.  His undies are damp most days, but is it because he doesn't want to be inconvenienced?

Dr Shukla planned to give his entire GU system a 2 week " break" by placing a suprapubic catheter in for 2 weeks.  On Nov 9 Jack's Cystoscopy went well and we began our adventure with his "tube".  What an adventure!!!  Half the time he was running around like a crazy person- sneaking off to play tackle football with Cole!!!! The other times were filled with screaming and anxiety and pain.   His urethra burned every time he tried to void.  Days when he played too rough, he peed blood for 24 hours.  2 nights his urine was so pungent that we feared a UTI.  His tube even clogged one night with a white sandy substance... ?

Today (Nov 23) we trekked back to Philly for his follow up tests.  He fought for his life during his lab work.  He tolerated his ultrasound quite well, and the IPod kept him nicely distracted during urodynamics!!  He earned  all 3 of the dollar store prizes I brought a long.  Well, he did not earn one for labs, but I felt terrible that he was so scared.  I could hear him screaming down the hall and around the corner!!

His creatnine actually went UP during this trial.  from 0.6 to 0.7!  It was supposed to go down to a normal 0.4.  We think it's because he had to be forced to drink or eat anything these past two weeks, he's probably a little dehydrated.

His ultrasound still looks very dialated.  The Dr said that it may have improved ever so slightly.  Unless he's having UTI issues again, we are going to let his humongous ureters be!

He did not like the anal prob during the urodynamic study, but really tolerated it quite well.  The worst part was pulling the sensor stickers off of his butt cheeks!  A simple bandaid was placed where his tube had been pulled out.  Amazing!

His bladder held apps 60cc and his diverticulum held apps 65 cc before he had to pee badly.  When he first peed, his bladder emptied nicely but the diverticulum remained.  When we instructed him to pee again, he pushed extra hard and emptied the diverticulum.  The moral of the story?  He must sit to pee.  Void once, sing the ABC song and then void again.    The Dr thinks that he is possibly dribbling after his voids because he is not emptying his diverticulum.

Fun fun fun.  We're home after a 2.5 hour commute and Jackson is playing "Verse Football" with Jimmy (The get to tackle each other).  The squeals are AWESOME!!!!!!!  He started the day in a Superman costume that is for a 3 year old, but he claims it made him more brave!

NOV 9 SURGERY:

We always bribe him for surgery or tests with toys... works pretty well and I am not too proud to admit- or suggest- it!

LEGOS!!

getting a little nervous... Silly Juice has not kicked in yet

Post Op, he did not want to wake up.  

On our way!!!!!  We stopped at a ret stop so he could vomit all over their family bathroom.  You're welcome.  The rest room was cleaner when we left, then when we darted into it.

Jimmy was very curious and Jackson was excited to show/team him about the tube.

Day 1 was  a rough one.  Lots of bladder spasms and pain.  It burnt him to vow, then entire 2 weeks.

Site was healing.  We usually had a dressing with 2x2s and tegaderm on it. 

NOV 23 - TESTS

 We ate at Wahlburgers on the way there!
Jack's face is SO FUNNY.

Not any better than any other burger joint  :(

We took lots of selfies to kill time.

He was TRYING to lick me.

ultrasound

He was proud of himself when he waved at sick kids and made them smile.

Reason #42,691 I love Jason

He can't even fit 1 cheek on the little seat.

The boys in their flannels ready to run away from the hospital when it was all over.

Brain Tumor!!!

Where in the world do I begin?  It's almost a funny story... almost. But, the ending sucks. Like, really, big time sucks!

In October, Mandy (my sister who is 2 years younger than me) had a TERRIBLE headache for more than 10 days, so they sent her for an MRI.  I was worried. I prayed that it would not be a slow bleed or some sort of tumor. We all prayed hard. Our prayers were answered.  There was no tumor... just early onset Alzheimer's.   Whew!!   Wait!!  WHAT?!?   "It's probably genetic" they said.

And with the word genetic,  and our shared failing memories and hearing, I contacted my Dr for an MRI - just in case.   I told no one (except Jason), I didn't want anyone to worry.  I would just let them know when it was over that my MRI showed a clean bill of health.  My plans were made and life was moving on.

Meanwhile, the Neurologist read Mandy's MRI and assured her that she did not have Alzheimer's, just an oddly shaped brain.  Thank you Jesus!!!  That explains a few things too;)  We can laugh about it now.  In fact, I envy the laughter.  I'd give anything for silly laughter.

I have days filled with laughter.  Not the silly kind.  It's a sinister laugh.  It's a wild, chaotic, out of control laugh.  No one knows why I laugh. I sure as heck don't know why I laugh. But, I've done a lot of laughing these past 4 days.  Laughing. Laughing. Laughing.  It usually end in tears.  Occasionally it ends in howls.  The "why me?!?" kind of howls.

"Why do you laugh?" you ask.   Oh, only because I have a BRAIN TUMOR.  A bloody brain tumor.    Right there... in the middle of my brain.  In the right cerebellopontine angle, to be exact. And it's big, according to Google, it should have been removed 2cm ago.  (It's 3.9 x 1.5 x 3.3 cm) Darn you Dr. Google.  It's big enough to push on my medulla oblongata and my pons.  No need to look them up.  According to Dr. Google,

the medulla oblongata is only "the  most important section of brain".  It is responsible for all of the things we don't think about... breathing, swallowing, blinking and so on and so on.  The pons is basically the message  center between the brain and the rest of the body.  And that is your Anatony 101 for the day.  You're welcome.

The initial MRI was read to be a probable epidermoid tumor. Basically, a congenital defect that is so slow growing that it takes 20-40 years before you start exhibiting symptoms.  They account for only 1%  of all brain tumors.  Apparently, I didn't want Jackson to be the only Stringham with a rare disease.  Oh, the things we do for our kids.

So what now?  I don't have a clue.

I spent the weekend researching. I've spent today on the phone with insurance, MRI places and finding the right Neurosurgeon.  Tomorrow I have a repeat MRI, this time with IV contrast to help convince the Drs that it is not cancerous.  Wednesday I'll spend the day at CHOP torturing, I mean testing Jackson's bladder and kidneys and finally getting this gosh-darn catheter tube removed.  Prayers appreciated, by the way... this has been a very anxious 2 weeks for my little man.  The worst part, is that he has no idea what he's in for Weds, he just thinks that his tube is "coming out".  When do you tell him that it will be pulled out after blood work, ultrasounds, uroflows and urodynamics?  I've learned over the past 5 years, that there is no right time!

But, I digress.  That is where we are at.  I'm taking time off of work this weekend, mostly because I can't bear the thought of being  up all night with no one to talk to, other than Google.  Also because I just want to be held.  Held tight, maybe even squeezed.  And told that I am loved.

I'll keep everyone updated as things happen.  I'm thinking of starting some sort of blog or fb page that I can update easily without having to call/text everyone individually.  It's hard to keep responding to texts when all I want to do is sleep, I mean hang out with my kids;)  Also, my parents are in the thick of it.  Telling my mom was the hardest part, I kept imagining someone telling me this about one of my kids.  The thought of that makes me want to vomit.  Projectile vomit.  I'm sure they know that they are loved and thought of and can call any of their family if they need anything.  I guess I'm just asking that you don't bombard them with calls right now.  Besides, my mom is already prepping for Thanksgiving dinner and we would all be sad if she was distracted from her cooking.

Happy Thanksgiving everyone!  There are so many reasons to be thankful!!  Jaylee making the PA All Star Rugby team, for example.  Even though she's only attended 4 practices and played a total of 5 minuets in the games!  She tried out the past 2 Sunday afternoons.  She's headed to NYC this weekend for a huge tournament. I am so proud of that girl!!

Want to play Spot The Tumor?!!?

From my studies as a Radiologist, over the past few days, I observe that the tumor did NOT glow with the IV contrast (see below picture), therefore I have decided that I do NOT have cancer, just as the Drs predicted. :)  Let's hope that I am right.

The radiologist agreed... no enhancement. There is some compressing on my fourth ventricle.

What would YOU do if you found out you had 1 week to live?  (hypothetically speaking, I'm not being dramatic or thinking I will die this week)  I thought my answer would be to travel and have an awesome adventure.  Turns out I just want to lay in bed and watch TV.  Huh...

Halloween 2016

Everyone wanted to do a Star Wars theme, since the boys are SO IN TO Star Wars for the past 10 months.  Except the girls.. they wanted nothing to do with it.  punks!

Jennibelle and I made her gum ball machine.

Jaylee had the idea for a Woods woman.


SURPRISE... the boys were Star Wars characters (and Jimmy has been "Chewy-bacca" for the past 6 days straight... cha ching!)


Jason's Storm Trooper outfit was a little short in the waist for him, so we were vampires at the last minute.


Our pumpkins all turned out well this year too...

school 2016

Jaylee (13) 8th grade Middle School

Team C

Soccer Goalie, School counsel

Jennibelle (11) 6th grade Bonfield El

Mr Locker

Kindergarten Safety Patrol, chorus, orchestra, bass

Walks her brother to/from school

Jackson (5) Kindergarten  Bonfield El

Mrs Delmotte

1/2 day 

Then on October 6, his dream of staying all day came true...
On October 21, her earned his Top Banana Award for knowing all of his letters.
This kid is so smart!

SVHS 20 years later

We've been out of High School for, literally, 20 years, and there was still drama!!  I was lucky to be unaware of most of it, until I arrived at the reunion.  Apparently, there was an anti-reunion party at another location.  (?!?)  It was in a basement at a popular bar, back in Delco.  Only 20-25 of us students showed up.  Some brought spouses, others came with friends.  Cris Leal came all the way from Brazil!  It was great to catch up with her.  It was nice to have Jason there with me, since I get nervous when I have to talk to people, lol.  It was a bad idea to drink 3 beers in the first hour, though.  I was excited to catch up with a few particular friends from high school, but was a little disappointed.  I guess if we really had a great connection, we'd still be friends.  I was terrified when LeAnn's ex showed up at the reunion, just to start trouble.  That was my cue to exit.  We didn't take nearly as many pix as I expected us to.  Since FB is around, Im surprised that we even had a reunion!  Not sure I'll attend anymore though... 

LeAnn Kuser, me and Cris Leal

Kim Hinkelman, Cris, me & LeAnn

 

I hand't seen Cris since I was pregnant with Jennibelle, my favorite daughter. 

(BTW... Jenni altered my computer so that everything I type her full name, "My favorite daughter" pops up afterwards. I don't know how to fix it...)

Pig Race 2016

THE PIG RACE

It is our welcome to Fall.  It is our children acting like animals out there.  It is determination.  It is Mama getting lost in the moment and cheering and jumping around like a crazy person.  It is mud.  It is tears over NOT catching the pig.  It is FUN.

Jimmy got out there are tried his best.  He didn't need to be with his brother.  He had a blast!  Jackson was so close many times.  He ended his race in tears because he was not victorious.  Jennibelle gave true effort this year... and she was close so many times.  She was sliding and diving and rolling and grabbing and fighting.  Jaylee accidentally went with the younger girls and was not successful, but then she went with the teenagers and fought again... to victory.  A 100 lb pig!!  Everyone had left after her race and then we couldn't find her.  I peaked out at the race going on and caught the end of it.  

This year, some of us ate at El Serrano for my birthday before going to the race...

I hope this isn't a premonition...

Jimmy 3, Cole 6, Jackson 5

Jaylee and Olivia Herr (13)
I didn't get any pix of Jenni and Allison Zimmerman.

Newsboys Concert

What a concert!!

What a show!!

What a message!!

What a life experience!!

So happy I took the girls!!

We danced the nights away - ON the chairs!!

WOW!!

This was the opening artist... Jaylee apparently loves one of his songs.

Sleep Study, Family Style

We make sleep studies look good, haha!

First Jackson, then me... who's next?

Jason or Jimmy is my guess.

I (like Jackson) have mild apnea that doesn't need intervention unless 

I find myself very tired during the day.     Haha.

Jaylee's middle school soccer

Soccer came.. and went.  So. Quickly.

When it was here, I found myself nervous and even angry at times. But now that it's done, I find myself full of regret... why?  Why did I get angry?  Why did I not think she was trying her best at times?  Why did I expect her to protect the goal like a professional?

She's really quite good!  She's definitely not afraid to get physical to get the ball! She's even trying out Rugby because of it!!  She was Varsity goalie again, but shared the spot with another goalie (Maddie Brown).  They each played 1/2 of each game, except when Jaylee had a huge hematoma to her Peri-area and was out for a week.

She didn't love the season this year... her new coach was bizarre.  They also had high school girls on the team this year, blowing the 8th graders chance of being the team leaders.  I'll never understand why Lancaster County brings down ninth grade players... weird!

She even scored in her final game, since they were winning by 8 goals, they put her as striker!

Here's a few shots of her 8th grade season...

"Be Ready!!"

 

and during half times, the field looked like this...

Poppop-Grandaughter Dinner Date

Jason was in Seattle for his Grandma Lee's funeral, so Poppop stepped in to take his place.  LEFC threw their party at an old barn this year.  It looked lovely, but it was very cold that night!  Poppop gave each girl a personal note and flower.  He opened their doors, pulled out their chairs and danced the night away with them.  They were the last "couple" there because he was teaching them a Greek dance. They are lucky girls!