Round two. PHILLY HERE WE COME. #URONENAMILLION

Get the entire story start to finish here:
Beginning to end Judy's story

I have a few updates to report on today.  So I will try to keep them as brief as possible but still give you as much information as I can.  I don't want to bore you.

The first update I have is from Friday July 29 2016.

We had yet another follow up  appointment with the head and neck surgeon in Omaha. The Vist went great. Judy has been having quite a bit of discomfort in her nose since the surgery so she was looking forward to this Vist to the doctor.  She was hoping he might be able to help with some of the pain and discomfort she haveing and it has been increasing getting worse as the days go on.

During the appointment they did their normal check up.  They looked in her nose asked her some questins, and then decided to use this special Camara scope to get a closer look at things since she was in the office.

Ok folks! THIS IS WHERE I BELIEVE I MARRIED SUPERWOMAN!  I have seen them use this scope one other time, but I guess I did not pay attention the scope itself.  It was HUGE!  The stuff she sat through while they where "CHECKING HER OUT". SHOOT!!! I was asking the nurse for anastasia..   Judy sat there like a trooper.  I know they did more then just check her out, they were pulling on stuff inside there.  My eyes are watering just thinking about it right now.

She is SUPERWOMAN I tell you!

Anyways, Judy did feel alot better after her appointment, so whatever they did, it helped her to feel better. So all is well.

Next:
In my provides post I told you how Judy had sent away her entire medical history in a box to a specialist.  So We finally hear back as to what his recomandation was going to be.

The specialist's that was reviewing her history was Dr. Norbert Liebsch MD, Phd.  He is one of the leading specialist in skull based tumors out of Boston Massachusetts. DR Liebsch is very familiar with tumors such as Judy's Chordoma.

Dr. "L" as we call him amongst our selves, because we do not want to mispronounce his name when referring to him, will only review Judy's case. Once done he will then and passes it on to whomever he feels is best qualified to handle it after he reviews it.

We definitely know Dr "L" is qualified.  First off he is reviewing Judy's case on his personal time.  We knew this because we received the call from personally late one evening, with the call lasted over 45 minutes.

The second way know he was qualified, he started telling Judy step by step how things happen to her involving her health and the tumor.  It was as though he was watching a movie of Judy's life.  Right down to how she went from doctor to doctor. Dr. "L" said and they said this and told you that. It was scarry how dead It was.

So that conversation lead to Judy sending in all her records to Dr "L".  The Dr "L" Recommending our new surgen Dr Paul Gardner MD. of Pittsburgh Pennsylvania.

That leads us to today August 03, 2016.  Judy has set a date for her second surgery with Dr Gardener to do a total resection of her Chordoma in Pittsburgh pennsylvania on August 17, 2016.

We are making plans, setting reservations, working on booking flights and other needed transportation.  It looks we will need be in Pittsburgh for at least 2 weeks maybe longer depending of how her surgery goes.

So alot to do. Alot going on. Please keep Judy in your prayers. Keep our family in your thoughts.  FOLLOW OUR STORY FOLLOW OUR JOURNEY. #URONENAMILLION

For those who are Interested there has been a Gofundme account set up to help off set some of our expenses with Judy's surgery and cancer care.  I would like to let everyone know this probobly has been one of our hardest steps with Judy's medical stuff, asking for help. Why? Because we are not used to being on the receiving end of things I guess.

But then I remembered a saying I once told someone who was going through a similar situation when I was a pastor years ago. I had forgotten it and actually had to look it up so I could get the words right and the authors name correct. I believe it applies to us today. It helps me remember what I realy need to be thankful for. It also helps me to remember who I should be thanking.  Thank you everyone!


"IF YOU'RE GOING TO TALLY UP THINGS IN LIFE, TALLY UP WHAT OTHERS DO FOR YOU, RATHER THAN WHAT YOU DO FOR OTHERS.

KELLEY BRIGNELL

gofundme.com/judygabriel

RECOMMENDATION IS IN. plans are starting. #uronenamillion

Missing some of the Story? Start at the beginning by click here. one and a million home page

The following is  MAINLY quoted text from Judy’s Facebook page.

On Thursday the 28, 2016 I reported how my wife had sent her medical records in a box to a leading specialist for Chordoma resurch at Massachusetts General.  On Monday, July 25 2016 we received a call from him, to tell us he has already reviewed her case.

It is his recommendation Judy be referred to Pittsburgh, PA to Dr. Paul Gardner for a total resection of her Chordoma. After the specialist reviewed the images before and after surgery, it showed Judy's first surgery did not yield as successful results as we hoped.  There is an extremely large amount of the tumor remaining.

Additionally, based on a MRI from 2010 it appears there is evidence the chordoma was beginning to form back in 2010.  Unfortunately there was no follow up MRI's ordered to monitor any changes.

At this point Judy is waiting to hear from Dr. Gardner so she can begin to schedule all necessary appointments to attempt the total resection of the chordoma. Please begin to pray for travel arrangements and the removal of the entire tumor.  As it is the best form of treatment for chordoma patients. After surgery we will begin to consider proton radiation treatment plans.


(DIRECT QUOTE FROM JUDY)
Words cannot express how grateful we are for the outpouring of support we have been receiving.  We want all of you to know how much we appreciate your prayers.

Thank you for reading.  Following along with our story follow along with our journey.  #uronenamillion

The University of Nebraska Medical Center Truhlsen Eye Institute

Back were it all started.

So today Judy and I are back at the eye doctor's office who initially found her tumor.  It's just a follow up appointment,  but at the same time Judy is hoping maybe she can find out some information about her double vision.  It's been about 90 days since her double vision peremenitly started. So she is always hoping for any type of hope.

So here is fingers crossed. Maybe we can get good news about her double vision.

So we had about 30 minutes alone time in the doctor's exam room, it probably was not a good idea.  We had few minutes to take some silly pictures.  It helped pass the time and take Judy's mind off things for a few minutes.  She had some fun.

Follow our story follow our journey.  #uronenamillion on Facebook and Twitter

HER LIFE IN A BOX. #URONENAMILLION

So today Judy is mailing off her life.  Well it seems like it any ways. It is the last 5 years of her medical stuff in a box.  Everything from doctors notes to CTs and MRI scans as recent as 3 weeks ago.

The goal is now to send this information to a world renowned specialist in the field of Chordoma’s research.  With his knowledge, skills and contacts this specialist will review Judy's case and make a recommendation for treatment.

Judy's  has spent the last week gathering information, compiling facts, working literaly into the wee hours of the morning.  Now she can finally relax. Considering she just had brain surgery three weeks ago, it's well deserved.   You go Judy.  GREAT JOB!

It turned our world upside down #uronenamillion

So today is the day of Judy's testing in Omaha.   It's an early day so we are  planning on spending the entire day in Omaha.  We even trying to decide where we might want to eat for dinner.  There are a lot of restaurants in Omaha we don't have at home so on occasion we will find a restaurant we don't have back at home to have a nice dinner as a treat.  

We arrive at the University of Nebraska Medical Center to the location of Judy's first appointment.  The appointment is where she needs to get her blood work done. As we are waiting for the appointment we start discussing what we think the neurologist might be looking for.

Judy finished her blood work and we started on our way to her next appoint and we continued our discussion about what we thought the testing was for.  Judy is the first to speculate as to what she thought he was looking for. The way he was talking, and the tests he is having me do, I think he is checking for Graves disease she said.  I never really have given it much thought,  I just thought he was being thorough.

For those of you that don't know Judy, she works in the medical field as a medical secretary.  Probably exposed to just enough information and to the right people that can very helpful and sometimes not.  (That is a joke)

Just a BIG SIDE NOTE.  It was those medical FRIENDS AND CO-WORKERS, who Judy works with, who insisted she keep pushing the doctors about her double vision, and NOT except the first,***and second ***lame answers she received.

Who knows what would have happened or how long things may have gone. … My Judy is very good at masking when she is in pain.. or frustrated, and she will work through things she shouldn't.  (Such as pain)

But her co-workers have started to figure her out. Your BUSTED JUDY!  (haha)  It was because of their persistence, and  helping Judy with medical questions and answers.  They helped her to see what was right and wrong medically and because of that were able to catch this.  I believe it give us a much better chance at beating this monster that has taken over our lives. Her co-workers also have been super supportive during her time of learning about this tumor.

So one more thing before I get off my soap box.  THANK YOU TO HER CO-WORKERS,  for your persistent,  understanding,  love, and patience.  You are appreciated more then you will ever know.

Back to my story.

Okay so Judy and I were walking between appointments at the Nebraska Medical Center and discussing at that moment what we I thought the doctor was testing for. I of course did not really have any clue as to what he was checking for but Judy had her suspicions. She figured it had something to do with her thyroid or graves disease.

As we arrived at the Imaging Center we checked in and started waited for Judy to be called back. I knew the testing was going to take a while so I settled in with my phone, getting ready to find something to watch on Netflix. Then they called her back.

The mri seemed to take a long time.   I knew it was going to take a while, but this was a long time!  I went up to the desk to make sure that everything was okay. At one point, I thought I had heard an aid come out and mention something about having some technical difficulties with one of the mri’s and one of the appointments would have be delayed.  So being a concerned husband I started to wonder if there was a problem.  Did Judy became sick while in the machine?  Was she ok? You hear a lot of bad stories of what can happen inside an mri.  So I decided to ask at the front deck to see if everything was okay.

The lady at the front desk told me after she looked it up on her computer, your wife is in for a double MRI she should be done shortly. We didn't know anything about double MRI but ok just another test. Just a little longer.

When she got done with her MRI we both commented on how long it was but figured  as long as we still have time to make it to  our next appointment that was all that mattered right now.   So we made our way to the doctor's office so we knew we could find the right place. We found a quiet place to wait in between appointments and waited for the appointment to arrive.

We went to the office in time for the appointment thinking everything was normal. I guess looking back at it now things did run a little differently than the first time.  Our wait in the waiting room was longer than normal. We even had to wait in the exam room for a little while for the doctor to get there.  Now we know it was because he was waiting for the test results.  He was finding out that something was not right with the MRI reading.

So here we are sitting in the doctor's office  oblivious to what is going on, talking back and forth, actually making plans on how we were going to be persistent about getting some sort of help for Judy and not being BLOWN OFF AGAIN.  Judy was thinking he was checking for graves disease or even for her past thyroid problem.  I on the other hand knew exactly what it was, ok I had no clue.  When the doctor came into the room the first thing he said was well the good news is you don't have any tumors on your nerves going to your eye. We looked at each other and said That is good news. But i guess we did know if he was joking,  to break tge tention or something.  The he said,but you have a tumor on your clivus!

Judy and I both looked at each other once again. I think the doctor could see we both had a puzzled look by now.  We went from a sort of weird joke to BAM WHAT?!??!  

He started to explain what he was talking about by saying the results of Judy's MRI  showed there is a tumor at the base of her skull in an area called the clivus. He said  he was making an appointment with a neurologist and they would tell us more about what was available for treatment options.  

At that point  of course Judy and I were both a little shaken up and didn't know what to say or what to even think.  Judy started to  break down a little. The doctor handed judy some tissues and asked if we needed a minute to gather our thoughts , we agreed.

He came back into the room and wanted to make sure that we knew exactly what he was referring too. We asked if we could see the images of MRI so we knew what we were looking at. He said he didn't have the images yet and he was just told by the doctor who read the images to him.  At this point he knows there's a tumor and it is on her clivus and they're going to have to give you more information from a neurosurgeon.  

SO HERE IS WHAT WE KNOW:

The doctor was only able to tell us basic information that day. He told us where the tumor is located.  They generally can't take them all out. It'll probably have to be treated with radiation. It will involve a surgery from a neurologist. The final decision will be up to the surgeon to decide as to the Best way for surgery to be done and what would be the safest for judy.

The doctor then said I have to be honest with you I didn't even see this coming.  I wasn't even trying to test this. I will have my assistant make an appointment with a neurologist as soon as we can.

Judy still had to know was this the cause of My Double Vision all along and will fixing this tumor help with my double vision.  The doctor  said he did not know. Maybe after you have this tumor under control you can have a corrective surgery on your right eye if fixing  the tumor doesn't help your double vision.

The doctor left the room which gave Judy and I about 5-10 minutes to talk together and gather our thoughts.  Our world had just been turned upside down and we didn't know what to think. A tumor!

The nurse returned with a piece of paper with an appointment time and the name of the neurosurgeon on it.  Here's the appointment for a neurosurgeon and the information you need. She said.

We asked to see the doctor one more time before we left because we had one more question for him.  He came back into the room and asked to see the name of the neurosurgeon before answered our question. This part was a little ALARMING to us, we did not know what to think...still don't..  he kinda looks like the name on that paper and made it obvious the person we had an appointment with was not his first choice.

WHAT???

Okay so you're giving us an appointment to a neurosurgeon that is not your first choice for a neurosurgeon. … This person is... the person working on my wife's brain.  That doesn't sound very good. But we WERE NOT IN ANY CONDITION FOR QUESTIONS  we we're still in a State of Shock we didn't know what to do.

After that I really don't remember much else of the day I don't remember much of the ride home.  The one thing I do remember is sitting in the car after that appointment just before we went home.  Judy and I decided that we did not want to stay in Omaha for dinner.   We just wanted to go home and that was pretty much all I can really remember about that day.  I know we probably talked about it. I know we discussed what it meant and I'm sure that we went online with our phones looked up CLIVUS. Well, Judy did, I was driving. I am sure she looked up to see what a clivus was and where it's located and why there would be a tumor there.

So that's how we found out about the tumor. But there's still more to the story believe it or not. At this point we don't really know what kind of tumor it is. I know this post is a little bit longer than the rest of them but there will  be many more to come. Thank you for reading and following along.  Follow our story follow our journey #uronenamillion

We know what we don't know? #uronenamillion

So we know Judy has a tumor on her clivus but we have no idea what a clivus is or where it is or even is located.   Honestly, I don't know if the doctor really even knew much more about it either.  I don't mean about the tumor in general, but Looking back, I am sure he was not ready for what he found that either. That would explain the lack of information he was able to give use on the subject. You would figure after learning something like having a tumor they would give you a ton of information on the subject to take home. But nope.

I do know the doctor said he just got off the phone with the person who read the results to him so that was the reason we had waited for such a long time in the waiting room prior to seeing the doctor.

Sometimes people say that giving no information is sometimes the best thing for people. You have heard the saying what they don't know won't hurt them. That may have been the old way of thinking, But in today's world it is not the case. With Google, the world wide web, and today's technology at our fingertips, having little or no information can be the worst thing for some people.

So at this point all we have been told is Judy has a tumor and it was located on her clivus.  We also have learned that this tumor will never be able to be completely removed and she will need some form of radiation treatment.
So we were just sent home to wait for an appointment with a neurologist. This was no different then handing us a stick of dynamite, with a short fuse.   The fuse being time and the internet.

On the way home the first thing Judy did was to look up to find out exactly what and where the clivus was and what kinds of tumors grow on the clivus.  So and so forth.
Knowing what a clivus was step one. Then our mind and the internet got away from us.

The Clivus, the bone located at the base of the skull so we now know where the tumor is located. That narrows down things quite a bit. But even with this information there still were number of different types of things that it could be.  How big was it? Where it was located? How would it be treated? These were only some of the questions we had. And trust me we a million.  It seemed like with every answer we found we would have ten more.  The information we found led us to even more questions we needed answers to before our appointment with the neurologist.

We never felt more lost. We never felt so alone.  We did not know where to go, what to do, who to talk to, all that we knew is that things were bad, very bad.  Follow our story follow our journey.  #uronenamillion

Thorough neuro (Chordoma eye exam) #uronenamillion

Need to start from the beginning click here: The Rest of the Story

The day of the appointment finally arrives and it could not get here any sooner. Judy is now going on 27 days of having DOUBLE VISION, and hopefully today she will finally get some answers.  

It's just under a two hour ride to the University of Nebraska Medical Center where the eye neurologist has his office so our trip seemed to take forever.  Once we got to the office, the visit itself, moved quickly.

Once we were in the examining room the neurologist gave Judy the most thorough eye exam I have ever seen.  Trust me I have worn glasses since I was about 8 years old, so I have seen my fair share of exams.  He ended the exam with with this little card he held up to Judy's right eye and the higher it got the less her double vision become. He then said a negative number to his assistant who typed it into the computer.

During the entire exam he was quietly mumbling instruction to an assistant who was quickly typing information into a computer.  It was interesting because I was closer to the doctor then the assistant, and I could barely make out a word he was saying.  At the end of his examination he said OK let's get her a negative prism for her glasses.  The doctor then proceed to say I believe you are experiencing some swelling in the nerves that control your right eye. This is why you are experiencing double vision.

The doctor continued to explain he believed the nerves leading to Judy's right eye were swollen and inflamed and because of this it was causing her eye to become (lazy) and therefor creating her double vision.  So he was hopeful that if we treated the inflammation we would be able to correct the double vision.

The next hurtle would be to figure out what was causing Judy's eye nerves to become swollen and inflamed.  The doctor suspected it probably was caused by Judy's recent increase in migraines headaches.  The second possibility is Judy has a history of an existing thyroid problem.  Both need to be checked in to as possible contributors.

The doctor concluded his examination by saying to Judy,  “ I am going to have you come back for some blood work next week.  In the meantime take this anti-inflammatory medicine that I am going to prescribe.   Taking it will help reduce the swelling in your eye nerves and should help with the double vision. I am also going to send down a prescription for a prism that sticks onto the inside of your glasses.”

The interesting thing to note at this point of Judy's doctors visit is the doctor turns around to his assist and says, “Why don't you schedule her for a MRI on the same day next week too.  Let's schedule these tests in the morning, then schedule her a follow up appointment with me in the afternoon.  This way we can cover all our bases.”

Judy gets her appointment scheduled and a new prescription and we are on our way with a new ray of hope. Now maybe she can start getting some relief from her double vision.

We leave doctor's office and go to the conveniently placed optical center down stairs where Judy received her new stick on prism for her right lens hoping for some sort of visual relief.  why wouldn't she, when the doctor held up the card in the office it was working.  

So honestly she was hoping for more of an instant improvement, but no.  Did it help? Maybe a little.  She was still seeing double, but now in her right eye, it was cloudy,  and in the corners she was seeing these star bursts from the prisms.  But maybe it's because she needed to get used to them. Judy figured she just needed to start out fresh in the morning.  So she took them off and waited till morning.

In the morning Judy tried her glasses on, once again hoping for some improvement. Not much changed. They did help, a little, she could see some things better.   If it was up close it would be OK.  But the further out you went the more double it became.   It's better than nothing, maybe the medicine will help.  

One more post until Judy’s MRI.  Follow our story follow our journey. #uronenamillion