Saturday, November 29, 2008

in B-town with Shawn

Yesterday was one very long day - started at Northwestern first thing in the morning for a blood draw, then on to radiology for a CT enterography.  As Shawn was filling out paperwork, the front desk handed him the order to take back with him.  Shawn glanced at it and continued writing, then stopped and looked again.  The date was 9/29 and it was for the CT done last month, not the enterography that is supposed to be done today.  We brought it back up to the desk, they checked and said that this what was sent down to them this week.  Lots of phone calls ensued - the doctor's office was closed, doctor on call didn't know anything about it.  This is where knowing Shawn's doctor personally saves the day - I called him at home, no answer; his cell, no answer.  So then I call his wife on HER cell and thank goodness she does answer - and Walter is there with her.  THANK YOU SHERYL!!!  A two minute conversation with Walter is all the lab supervisor needs to proceed with the test.  

After the scan, Shawn wanted to have lunch, having had nothing to eat yet.  He really likes a place in Water Tower, Food Life.  We thought perhaps it was early enough that it might not yet be crowded since it's just a little after 11, so we walk over to Water Tower.  We should have been clued in by the fact that it was so crowded on Michigan Avenue that we couldn't walk very fast.  Got to Food Life and turned right around.  

Went to Blackies instead for a burger / salad.  One nice thing about the day after Thanksgiving - the roads were empty, both the drive to Northwestern and the drive home were completely traffic free.

Shawn was intent on getting back to Bloomington on Friday, said if he drove on Saturday he'd spend the whole day sleeping and he had lots of errands to do.  So Dave and I decided to come to Bloomington for the weekend.  Shawn and Arie and I left last night just after 5, got here at 10:30.  Dave drove down this morning and we'll go back to Oak Park tomorrow morning.  

So here we are in Bloomington; getting ready to go to breakfast and then off to help with errands.  

Last night in the car we were talking about people being happy - I asked Shawn if he thought he was happy right now and his answer - with no hesitation -  was "yes".  That's something else to be thankful for.


Thursday, November 27, 2008

giving thanks

I woke up this morning knowing Shawn was sleeping in his room down the hall.   My house feels whole when he's here.  And my own level of anxiety is just a little lower when I can see him.

Today is Thanksgiving and I'm sitting here thinking about all the incredible things in my life I have to be thankful for.  And as much of a struggle as this past year has been, there are many many things on that list.  

First and foremost I have to say I'm so overwhelmed with Shawn.  His life has turned so completely upside down from anything we would ever have expected.  The frustrations he has to deal with on a daily basis would have been enough to make so many people just give up.  Instead he continues to focus on his classes, student teaching one day a week at the high school, teaching religious school, and writing music. His drive and determination astounds me and makes me proud. 

I know this has been difficult case for Shawn's endocrinologist - all the tests he's done to try to find the cause of Shawn's spells continue to come back inconclusive and many other doctors we've encountered  havejust given up on trying to find an answer.  Throughout it all Walter has reached out to other doctors for new ideas, most recently suggesting he could try to facilitate getting Shawn's case to someone from Mass. General or the Cleveland Clinic if our current correspondence with a doctor from NIH goes nowhere.

Which brings me to the next person to be thankful for - Mrs. A.,  one of my mom's college friends.  Her late husband was an endocrinologist at NIH.  Mrs. A. suggested that her husband's friend, also an NIH doctor, might be able to look over Shawn's case.  We sent Shawn's rather sizable file to him, he looked it over and then sent it to another doctor at NIH, Dr. P.   Throughout the process Mrs. A. made many phone calls on Shawn's behalf, and she continues to check with us regularly.

Dr. P in turn is now trying to decide whether he wants to see Shawn himself or send him to someone else - his intial assessment is that even with all the currently negative biochemistry that it could still be what Walter suspected almost a year ago.  On Sunday night I got an email from Dr. P. asking about a few more tests he wanted to see. Dave called Walter first thing Monday and he said he'd be able to spend some time the next day getting something set up for later in the week.  So we were expecting him to call back on Tuesday.  Within an hour he called back and said it has been set up for this Friday.

Which means that tomorrow Shawn will have a CT enterography, along with yet another blood test.   So while we're still searching for answers, I'm thankful that we have so many very smart people interested in the search.

Finally, I'm thankful for all of you reading this.  Your support continues to lift me up and bring me hope.  

Happy Thanksgiving.

Friday, November 21, 2008

...and back home!

Echo showed no damage and Shawn's being released from the hospital.  

They've switched his blood pressure medicine back to what he was taking this summer,  also added aspirin into the mix to help prevent clotting.  

Bloomington Hospital

The last few days Shawn's blood pressure spikes have been lasting longer; last night after over an hour of bp above 180, he went to the emergency room.  He kept putting it off; saying "by the time I get there it will be back down again."  Arie bargined with him - said he could take his blood pressure in the car when they got there; if it was down they'd just go back home.  (Thanks, Arie, you're one smart girlfriend.)  So of course they got there and it was still high; in the car it was 180something, but in the ER it was actually 194/116, pulse 155.  Needless to say they didn't tell him to just go back home.  

It took three applications of nitroglycerine before it started coming down.  EKG looked fine and his enzymes are ok but they wanted him to stay overnight and have an echocardiogram in the morning. 

He was told that would happen "first thing" this morning, and that he might be released by noon if everything looked ok.  It's now noon in Indiana, and they haven't taken him to the lab yet.  If they want to keep him longer then we're planning to drive down there today although not quite sure where we'll stay...

As soon as we know more I'll post it here.  


Monday, November 17, 2008

In the presence of greatness

Walking to the el tonight, I was stopped just before I could cross the
street by the homeland security officer you can see in this photo.
What you don't see is the car that's just coming into the photo. In it
is none other than president-elect Obama. As he drove by I felt a real
thrill of knowing that I was in the presence of true greatness.

Saturday, October 18, 2008

CT Scan: thymic tissue unchanged; possible spot in duodenum

The CT scan shows no change in the size of the thymic tissue, which makes me very glad we didn't perform the more invasive biopsy. However there is a questionable spot on the duodenum, a common place for a carcinoid. The CT report mentions the possibility of a small bowel carcinoid. However, a carcinoid there shouldn't be causing any of these symptoms without the liver producing seretonin or 5hiaa. So the picture continues to be puzzling. The CT scan last January also noted questionable soft tissue mass on the duodenum, but the MRI, as well as the octreotide scan at that time were both normal.

Shawn's doctor is still chasing up on some loose ends - including Shawn's latest urine test results, which have still not come back, and checking into recommendations for a gastroenterologist, the next 'ologist' likely to be added to the team. (Endocrinologist, Cardiologist, Neurologist, Psychologist, Interventional Radiologist, Epileptologist, Gastroenterologist...getting to be quite a mouthful!)

Meanwhile, Shawn's doing well in his classes, and it sounds like Heartsfield may be interested in purchasing at least one of his songs.

Sunday, October 12, 2008

Shawn and Zak sing at the Chicago Country Music Festival!


Shawn and Zak made a guest appearance tonight with Heartsfield at the Chicago Country Music Festival. Shawn's been corresponding with Perry for awhile now, the band may be interested in performing some of the songs Shawn's written, as well as some he and Zak co-wrote. Meanwhile, tonight they met the band members for the first time in person, and came onstage to sing backup on one of the songs in the set - "The Only Time I'm Sober Is When You're Gone".

The weather was absolutely perfect. Watching them onstage was certainly a huge high for ME, and I think even more so for them. As you can see from the photos, they seemed to be enjoying the experience as well. See More Photos Here.

Sunday, October 5, 2008

Thursday, October 2, 2008

Performance in Nashville

Shawn performed tonight at the Commodore in Nashville, TN. (Not to be confused with Nashville, Indiana). Started out with a few problems - first the battery wasn't working on his pickup and one of the other writers loaned him a guitar. Then because he was switching out guitars he missed the sound check, so the mic was a little soft on his first song. Nonetheless, he was fantastic (not that I'm biased). People stopped talking to listen to his songs. And he's been invited back in November.

All in all a very nice night!  See more photos here.
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Monday, September 29, 2008

L'Shanah Tova Tikatevu

For the non-Jewish readers among you, that's the equivalent of a "Happy New Year".  The Jewish new year isn't quite like the secular one - no midnight parties and champagne.  Rather, it's the beginning of a period of time for prayer and of reflection, self-evaluation and repentance, of renewal and turning to a new future.  

Tonight is the eve of this holiday; today was the beginning of a new round of testing for Shawn.  More blood tests today; urine tests to repeat while he's back at school.  New medication that might help both blood pressure and headaches.  In two weeks, he comes back to Chicago for a new CT scan and another doctor appointment at the headache clinic.  

On to much more positive happenings - this Wednesday night Shawn will be performing at a writer's night in Nashville, Tennessee.  You can hear a few of his songs at his website http://shawngilley.com.  Dave and I are driving down to Bloomington tomorrow after services, and will drive to Nashville with Shawn on Wednesday.    I'm really looking forward to it; it's been a few years since he's been in Nashville.  The last time he played at this particular place it was at open mic at the end of the evening - this time he has an actual spot on the program at 9:30.  

The real meaning of the Hebrew above is  - may you be inscribed (in the book of life) for a good year.  Which is my prayer to all of you and most especially to Shawn.  

Sunday, August 24, 2008

Shawn's Room

So here's the finished version of the bed (futon) that my previous post showed. Here are some other photos.
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Friday, August 22, 2008

First apartment

Moving day was amazingly smooth - the apartment complex had people to
transport everything from the loading dock into the apartments. We
took a few odds and ends in a cart sitting waiting for us at the
elevators. Not quite the way I remember moving into my first apartment
- up three flights of concrete steps.

The rest of the day was spent building furniture and unpacking and a
few trips to pick up the most important items such as toilet paper and
shower curtain rods. Then we walked to one of Shawn's favorite
restaurants, a sushi place a block away.

Saturday, August 16, 2008

:-)

Da Coach...

On Shawn's last night in Chicago we went to Ditka's for dinner - and there was Da Coach in person, looking exactly like his photos. Shawn got a football autographed, then went to buy another one and have it autographed for Arie. Is he a great boyfriend or what?

Friday, August 15, 2008

Studio time

Recording a few songs before heading back to school...

Wednesday, August 6, 2008


Greetings from the Jersey Shore!
Our first few days here were fantastic; in fact we kept hearing it was the the best two days of the summer. Beautiful sun, a nice breeze coming off the ocean, perfect warm, clear water... LBI at its best. Yesterday the weather was still nice, but there were lots of jellyfish in the water, so we hung out on the beach for awhile but didn't go in the water.

Check out more photos here.
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Monday, July 28, 2008

Where do all the dead pills go?

We seem to be accumulating lots of bottles full of medication that
Shawn is no longer taking. Today we added topamax to that collection,
although it will take 3 weeks for him to wean himself off it.

I'm not quite sure what to do with all these. At the moment they are
all dumped into a big baggie which is starting to get full. It did
come in handy though when trying to list all the medicine he's taken
for the last 6 months.

Diamond Headache Clinic

Here's the update from the headache clinic.  First they said that migraines can be completely ruled out.  However, due to the chin up accident I had in the fall, the doctor thinks I damaged the hypothalamus causing severe cluster headaches along with other problems.  He said it doesn't account for the blood pressure problems as those started before the accident as did the issues with the pulse and flushing however it does solve the problem of the headaches.  Treatment for this is threefold.  I have to take a calcium channel blocker three times daily.  I have to breathe 100% oxygen on the onset of a headache along with taking a spray of lidocaine up the nose.  The last thing the doctor said was that this whole ordeal "smells a lot like a carcinoid" so it sounds like we've still got some testing to do.  At this point however, I'm very excited to go back to school!!

Sunday, June 29, 2008

episodes not epileptic; atypical migraine with autonomic features could be considered

The above title is an excerpt from the final hospital report, which confirms that no seizure activity was seen during the hospital stay. There are still a few tests filtering back in but the tests looking for evidence of a carcinoid continue to be normal. During the vodka-induced spell, blood tests show high levels of hormones - the big question is why they are high.? Given the continued normal results for a carcinoid, looking further in the thymus just doesn't seem to be wise at this point.

We'll be following up on the headaches with a doctor at the Diamond Headache Clinic here in Chicago. Shawn has an appointment on July 28. In the meantime, he's going off as much medication as possible, down to one blood pressure medicine and the migraine medication. Blood pressure readings continue to be normal, even when he's feeling bad, which is very encouraging.

Sunday, June 22, 2008

Don't Blink

Something about listening to a live performance under the stars on a beautiful summer night - it transports you to a better place. Last night was one of those nights. Who could ask for more?

One of my favorite Kenny Chesney songs - which he played last night - is "Don't Blink". It describes so well how fast life is moving.

...
I was glued to my tv when it looked like he looked at me and said
"Best start putting first things first."
Cause when your hourglass runs out of sand
You can't flip it over and start again
Take every breathe God gives you for what it's worth

Don't Blink
Just like that you're six years old and you take a nap and you
Wake up and you're twenty-five and your high school sweetheart becomes your wife
Don't blink
You just might miss your babies growing like mine did
Turning into moms and dads next thing you know your "better half"
Of fifty years is there in bed
And you're praying God takes you instead
Trust me friend a hundred years goes faster than you think
So don't blink

Saturday, June 21, 2008

Poets and Pirates Tour

We're here at Soldier Field for the Kenny Chesney concert, also featuring Keith Urban, LeAnn Rimes, Gary Allen, and Luke Bryan. While it rained off and on this morning so far the weather has been great. We're all set for a perfect night of music.

Wednesday, June 11, 2008

Home Sweet Home

Preliminary report shows no seizures.  Migraine is another possibility that is being investigated by trying migraine medication to see what effect it has.  Also waiting for the blood and urine tests - these won't be back for awhile as they have to be sent off to the Mayo.     

Meanwhile, we are now back home, finishing up the last urine test here.  It feels VERY good to be back home.  

Happy Hour Part II

There was some confusion about the blood draw yesterday, so this morning we repeated the alcohol challenge - this time I managed to get a good picture of the bottle! They must be really wondering about Shawn down in the pharmacy.

We managed to get two separate blood draws this time so maybe it's all for the best.  

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Tuesday, June 10, 2008

taking a walk

Looking north from Northwestern's Feinberg building; you can see a little of the Hancock building and Water Tower place out the window in this photo.
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Watching TV with Arie

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Happy Hour

The vodka from the pharmacy came in a bottle that looks like cough syrup. I'm not sure it tasted much better, but it did make Shawn turn very red, gave him a headache, raised his pulse and produced lots of the wheezy coughing. What it didn't do is raise his blood pressure very high and they did not take blood during the hour that he was red. So I'm not too sure how successful the data gathering portion of this experiment was but the reaction itself was rather dramatic.


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chewing gum


So who knew that Shawn wasn't supposed to be chewing gum? No one told us...


When Shawn asked for gum yesterday I did first think "is there any reason why he can't have it?" But Dave and Shawn both pointed out no one ever said don't chew gum - so I gave him a stick. Must have been about 30 seconds later, possibly a full minute, and in comes a nurse. She looks at Shawn and asks "are you having seizures in your mouth?" and proceeds to hold out her hand with a paper towel on it, universal symbol for "spit out that gum!"


I may never chew gum again without thinking of "mouth seizures."

Monday, June 9, 2008

here till Wed?

Had to restart the urine collection at 5 pm; at this point it looks like we'll be here till 5 pm on Wednesday.

Here we are

As you can see from the previous post, Shawn's latest hair style is quite colorful, I think he should ask to keep them in when he's done, by the end of the summer all the cool kids will be wanting wires sprouting out of their heads. Maybe I'll try to braid it...


He started urine collection at 11:30 so we're here until at least then tomorrow. The doctor this morning said we might be here for 48 hours, depending on how it goes in the first 24.


We can use cell phones after all, although they don't want Shawn talking on one - so I have my cell on.


There was some legal issue about the alcohol but I believe the final word is that they can order it from the pharmacy and that will be ok. The plan at the moment is to see what happens today and then try the alcohol tomorrow with lunch.

All hooked up and ready to roll...



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Sunday, June 8, 2008

no cell phone this time

I just read the instructions for the monitoring at Northwestern tomorrow - no use of cell phones in the room. Also laptops can only be run on battery, so I'm not expecting to be online too much; I will try to post some updates if I can though.

Saturday, June 7, 2008

more urine testing

I don't know the entire sequence of events, but I do know that after careful instructions from Shawn's doctor, the lab managed to mess up what chemicals were to be put into the collection jars for the latest round of 24-hour urine tests. I also know that there were many back and forth calls between the doctor's office and the lab, the office and Shawn, and that Shawn made two separate trips to the lab and was yelled at by the lab technician that according to HIS book said what he was doing was correct...


I believe all of yesterday's collection was worthless but the jars he has for today are ok. So we may have to still do a second one next week.

Wednesday, May 28, 2008

Not Cushing's

The second test for Cushing's just came back negative. Also, the stress echo showed nothing other than he can't go very long without getting out of breath; blood pressure and heart rate were not elevated before he was too short of breath to continue the test.

A little over a week till his stay in the hospital, hopefully they'll be able to observe a spell there and find some other clues...

Wednesday, May 21, 2008

More tests ongoing

Blood tests from last week showed very slightly high value for Shawn's liver ALT, but just barely over the reference range.


Today he's having a stress echocardiogram to see how his heartrate and blood pressure respond to exercise. Next Tuesday he goes back to the cardiologist to go over the results. The cardiologist is also concerned about Cushing's and we'll be repeating the test for that.


He's switching to yet another bp medication. Also he went off the cyproheptadine and ranatadine and back on the special diet. He just stopped these meds Monday night and already the wheezy cough, belly ache, and muscle spasms are back, shortness of breath and flushing also worse.


On June 9, he'll be back in the hospital for an overnight EEG. The plan is to try to provoke a spell with alcohol and see what happens, also draw blood during the spell. Checking in to the hospital for happy hour... that should be fun! (But somehow I doubt they'll have drinks for Dave and I as well, maybe we should bring our own?)


All of these are ways of finding more evidence of a carcinoid and/or another explanation for the symptoms before contemplating the more risky surgery to take another look at the thymus.

Thursday, May 15, 2008

Next Steps

The cardiologist wants to do two tests - a stress echo next Wednesday, and an EEG (not yet scheduled). Possibly we'll also be trying to provoke a spell (with alcohol) before the EEG to see what happens during the spell.


The endocrinologist fears that Shawn's liver is enlarged, he took some blood so hopefully will know more about that soon.

More shuffling around of medications, also about to go back on the low tryptophan diet.

Both doctors seem concerned about the severity of marks on Shawn's hips and legs - look like stretch marks but have gotten MUCH more pronounced then they used to be. The cardiologist said his initial impression was that it looks like Cushing's. I believe the endocrinologist at the Mayo said so as well but then followed that with "the test for that was negative so I wouldn't worry about it."


We'll be talking more with Shawn's doctor in the next few days, most likely once he gets the blood results back.

Tuesday, May 13, 2008

Doctor appointments tomorrow

I haven't posted much here for awhile, both because I've been insanely busy at work and because there's really nothing new to report yet. Hopefully we'll have a better idea of what happens next after tomorrow's doctor appointments. He'll be seeing both his endocrinologist and a cardiologist tomorrow. So stay tuned...

Saturday, May 3, 2008

Springtime

The weather today is overcast and cool, but one look at my backyard
and you can see that spring is now in full bloom. This crabapple tree
only gets its chance to shine for a few short days, a week if we're
lucky, before the pink petals rain all over the backyard. In fact, they have already started...

Shawn's Back Home!

... and of course, so is his 'stuff'. But actually, he left lots in
storage at IU.
I expect I'll start seeing music instruments and guitar picks everywhere I look. And you know what - that's just fine with me - I'm so glad to have him home!

Tuesday, April 29, 2008

“We cannot change the cards we are dealt, just how we play the hand.” --Randy Pausch

Randy Pausch was a computer science professor at Carnegie Mellon University when he was diagnosed with pancreatic cancer in 2006. In August of 2007 a scan showed 10 tumors in his liver and spleen and the diagnosis was 3-6 months of healthy life left.


In September of 2007 he gave a lecture at CMU: "The Last Lecture - Really Achieving Your Childhood Dreams"
He also just published a book; a quick read but very uplifting and inspirational. You can read more from him on his Update Page.

Sunday, April 20, 2008

Happy Passover from Bloomington

We all gathered in Bloomington this weekend for Passover - my sister and her family came from Pennsylvania, my parents from West Virginia. We all attended the Hillel seder last night where my 9 year old nephew Henry did an absolutely stellar job at chanting the four questions. He got a rousing round of applause from the room. Best part of the seder (aside from Henry's four questions) was that I did NO cooking and NO cleaning...

Here's a photo of Henry and his 6 year old brother Sam - plus Shawn, Arie, Andrew, and Zak, who joined us this morning for brunch. More photos from the weekend are here, although you'll notice Shawn managed to be somewhere else when I had my camera most of the weekend.





Tuesday, April 15, 2008

A heartfelt thanks to all of you

It's hard for me to put into words what life is like right now. I feel like I'm living in some upside down universe where "normal" is this state of unknown and uncertainty and worry and fear; I don't remember the last time I felt otherwise.


I've had many people tell me I'm "brave" and "strong." I feel neither. I think I can speak for all of us when I say we have no choice. All we can do is put one foot in front of the other and move forward; not because we're brave or strong but because we are. Trust me, there have been many occasions were we think "we just can't do this anymore." But then the next minute comes along and here we are. And really what choice is there?


I know I can speak for us all when I say one of the ways we move forward is because of the tremendous support we've felt from all of you. The messages here on the guest book; the emails you've sent to me or Shawn or Dave; the phone calls; the meals you've brought us; the kind words and thoughts; the prayers said in synagogues and churches all around the country... when we reach the very bottom this is what picks us up; this is what keeps us going.


Even as I write this, I can feel you reading it, all of you. Those of you we've know forever and those who we've never even met, who are reading this because someone you know has told you about Shawn. In looking at the stats for this blog, I see that you come from Illinois, West Virginia, Virginia, Indiana, Californa, New York, New Jersey, North Carolina, New Mexico, Pennsylvania, Canada, the United Kingdom, and France. There's a real sense of power in knowing that you are all out there.


And I don't really know what I can say other than I am SO grateful for your support and concern. You may think it's not much but really it is everything. And I just want to say thank you.

Monday, April 7, 2008

Sometimes Inconclusive is just exactly that...

Turns out in this case, there was no assessment of normal vs. abnormal cells, just too sparse of a sample to see anything. We knew going in that a biopsy of this area was going to be tricky and it was.


SO what's next? For the rest of this month, we'll be changing around the medication that Shawn's taking; first increasing the dosage of cyproheptadine (the seretonin inhibiter) and then switching the blood pressure medication. This has to be done gradually but so far the increase seems to working.


Once school is over, the plan is to stop the seretonin inhibiter altogether for two weeks, back on the special diet and then repeat the blood/urine study. I don't anticipate these being very fun weeks as he will most likely start feeling lots worse without the medicine. Which is why we're waiting till he's back in Chicago closer to his doctor.


From there we'll assess whether to do the more invasive biopsy.

Wednesday, April 2, 2008

Inconclusive

From what I've read, an inconclusive biopsy means that not all cells look normal, there's just not enough to definitively diagnose it.  One possible next step is a more invasive surgery called a mediastonoscopy which is performed by a thoracic surgeon.  We'll post more details when we know more about this.

Tuesday, April 1, 2008

Happy April Fools...

Afraid the earlier post was no joke; but I thought I'd leave today with a smile - see New! Gmail Custom Time for a great April's Fool 'feature' for those of you with gmail. :-)

Inconclusive

Shawn's doctor just called - he didn't have much time to talk tonight but knew we were eagerly awaiting results, so wanted to at leave give us the short version - which is that the results are inconclusive. No positive finding of a carcinoid but also no way to rule one out.

We'll be talking more in the next few days about what is the best next step. In the meantime, we'll just have to stay for a little longer in the Waiting Place. Turns out there are lots of rooms there; we'll be moving from the the short term (intense) wait room back into the longer term wait room!

Monday, March 31, 2008

The Waiting Place

The waiting isn't fun; but I so much appreciate all of your thoughts and prayers as you wait along with us.

The other day while we were at Northwestern, I started thinking of  "Oh, The Places You'll Go" by Dr. Suess - a book I read countless time to Shawn when he was young.


You can get so confused

that you’ll start in to race


down long wiggled roads at a break-necking pace


and grind on for miles across weirdish wild space,


headed, I fear, toward a most useless place.


The Waiting Place


…for people just waiting.


Waiting for a train to go


or a bus to come, or a plane to go


or the mail to come, or the rain to go


or the phone to ring, or the snow to snow


or waiting around for a Yes or a No


or waiting for their hair to grow.


Everyone is just waiting.


Waiting for the fish to bite


or waiting for wind to fly a kite


or waiting around for Friday night


or waiting, perhaps, for their Uncle Jake


or a pot to boil, or a Better Break


or a sting of pearls, or a pair of pants


or a wig with curls, or Another Chance.


Everyone is just waiting.

And in the story the character breaks free of the waiting place and in the end goes to on to move mountains.  As will Shawn.

Saturday, March 29, 2008

anatomy lesson





Here's a sketch the doctor did for us of how he took the biopsy. (No, he doesn't print like that; I added the labels!)

His reason for choosing to cut through bone at an angle is to avoid nicking the aorta just below the thymus. Sounds like a pretty good reason to me.

Friday, March 28, 2008

Healing power

Zeke is providing much needed comfort to Shawn as he recouperates from yesterday's trauma.

Many Thanks

There are so many people to thank for helping us get through the past few days.

Walter and Sheryl for feeding us Wednesday night. The chicken soup, bread, pasta were excellent.

Mark and Evelyn for feeding us Thursday night. The turkey meat loaf, asparagus, rice pilaf, bread, and cookies were great to have waiting for us when we finally got home from the hospital. And Noah, Naomi, Rebecca - The get-well card with all the Camp Shalom pictures brought a big smile to Shawn’s face.

Linda for taking care of Zeke Thursday evening.



A big round of applause for our guardian angels at Northwestern:

Susan for bringing us coffee, sitting with us during the procedure, checking on Shawn’s progress, and the “spirits” to celebrate the end of an ordeal. You were a big help to two very preoccupied parents.

Dr. G for a few needed laughs, keeping us posted on the delays, and getting Shawn through the procedure safely under general anesthesia.

Dr. N for putting our minds at ease, performing the biopsy with skill, and checking in on Shawn many times before and after the biopsy.

Dr. S for being the best doctor Shawn has ever had and can ever hope to have.



And last but never least, thanks for all the thoughts and prayers from family and friends.

Thursday, March 27, 2008

Ready to leave

Out of recovery and ready to leave. Shawn feels like he's been in a
barroom brawl - and I think he lost.

Procedure went fine

Just talked to the doctor. Shawn's awake and in recovery, will be
there an hour or so. They took multiple samples, most likely won't
know much more until Monday or Tuesday. His blood pressure remained
fine during the procedure, very good news.

Sent from my iPhone :-)

Let the biopsy begin

They just took him back. Now the real fun begins...more of the waiting
game...or as Dr. Suess says, we're in the waiting place. Where all we
do is wait, wait, wait, wait.

Sent from my iPhone :-)

Latest time estimate: 3:30

They are wrapping up the previous operation now, guessing about an
hour till they are ready to start Shawn.

Delay

Afraid this isn't going to start for another few hours, the machine that the anesthesiologist needs is still in use in another operation
that is going longer than anticipated. They think it will be at least 2:30, possibly longer. I'll post again when they take him back.

Sent from my iPhone :-)

Ready for the biopsy

We're here and ready - just talked to the doctor who will do the
procedure. He said it should last about an hour. He'll have a
pathologist with him to determine both where and how much to collect.
We're waiting now for the anesthesiologist to come by.

Here's a picture of Shawn. I wonder who he's talking to? :-)

Wednesday, March 26, 2008

Phone? Who needs a phone?

Webcams and iChat are much better than just talking on the phone! Here's how Shawn and Arie keep in touch while he's here in Chicago.

Tuesday, March 25, 2008

Biopsy Re-Scheduled - Thursday at 1:00

There was some mix up in the scheduling, the biopsy will be on Thursday, not tomorrow. Apparently there was some miscommunication about whether they'd need an anesthesiologist or not; they do and can't get one for tomorrow morning so the procedure is now rescheduled for Thursday at 1:00.


On the plus side, I have a new friend Gloria from the radiologist's office - who I've talked to quite a few times now. She's been super nice and I feel like I know her; it will be good to meet her on Thursday. She was concerned about us taking time off from work on Wed. just to have the procedure moved to Thursday. Luckily for us we're both flexible enough with work for that not to matter. When she first said there was a problem with tomorrow I was envisioning her saying they couldn't do it till next week which would really have been a problem as Shawn's already on his way home! One day in the scheme of things is pretty minor. Although I'm not sure Shawn will see it that way when he gets off the plane...


In fact, I've got to go; it's time to go pick him up now.

Sunday, March 23, 2008

A prayer for healing

Heal me, O Lord, and I shall be healed;
save me, and I shall be saved,
for you are my praise. (Jer. 19:14)

Friday, March 21, 2008

Biopsy Scheduled

Just talked to the interventional radiologist's office - the biopsy will be done Wednesday, March 26, at Northwestern. We need to be there at 9:00, the procedure itself is scheduled for 10:00.

I've also heard from a friend of mine who works at Northwestern, she knows this doctor well and speaks very highly of him. Her summary of him is "we're in very good hands." Not that I expected anything different but it's very nice to hear.

Thursday, March 20, 2008

Happy Purim

In a comment, Leonard emphasized the importance of hope during this difficult time and highlighted the spirit of the Purim holiday. His words deserve repetition:
The message of Purim is that after we are thoroughly convinced that we as people can do nothing to escape a bad situation, H" provides an unforseen (and sudden) rescue. Perhaps all this happened at this very time to give you that hope.

As we wait to hear from the interventional radiologist who will perform the biopsy on Shawn, we will hope that rescue is at hand.

Three years ago, we were in Israel during Purim and had the pleasure of participating in one of the local parades. This video is from a much larger Purim parade in Israel, but captures the joyous celebration.

Wednesday, March 19, 2008

time to move on

Enough about the Mayo, time to concentrate all our efforts on getting closer to the recovery part of this journey. At some point I'm planning to write a letter to the clinic, but I feel like I need to get a little bit of distance from the experience first. As you can most likely tell, we were all rather frustrated and angry about the week, but it's over now and here we are.


On to the next step. We're waiting to hear back from the interventional radiologist who will be doing the biopsy. I talked to his office yesterday, they said they'd get back to us after he'd approved the procedure. I believe he's out of town until Friday so it may be a few more days before we have a definite plan in place.


In the meantime, while Shawn's not feeling any better he's certainly happy to be back at school.

Monday, March 17, 2008

A final note on the Mayo Clinic fiasco

I want to put Shawn's less than valuable evaluation at the Mayo Clinic into context. Shawn's doctor in Chicago had extensively discussed the case with the head of endocrinology at the Mayo Clinic. It was on the recommendation of this Mayo Clinic specialist that we brought Shawn there for "a fresh set of eyes." This seemed reasonable to us because of the complexity of the clinical presentation and the potential risk associated with the possible next steps. Thus, we went to Rochester expecting that Shawn would receive a careful and thoughtful evaluation to guide us in making difficult decisions.


And to add insult to injury, they never even looked at the scans of Shawn's thymus, the suspected bad actor in this nightmare. We brought the digitized copies with us and they were never uploaded and read by the Mayo radiologists. If this is how they treated us after coming there at the suggestion of the head of endocrinology, I shudder to think how they might have acted if we had just wandered in off the street.

Sunday, March 16, 2008

Afraid I couldn't agree more

In general, I try to look for the positive, especially in trying situations. Sometimes I have to try harder than others. But I'm afraid I have very little positive I can say about last week. I agree with everything Dave said in his post The Mayo Mystique is a Myth.


I always try to keep in mind that what we see is only part of the big picture - that things happen behind the scenes that we don't know about. I kept thinking throughout the week that this must be the case - if the endocrinologists thought this was neurological and the neurologists though it was endocrine, the coordinating internist would be talking to them and getting them to talk about other possibilities. It really never occured to me that at this point that all these symptoms would simply be dismissed, that he'd be told "on average your blood pressure is fine", and that "if there was anything seriously wrong, we would have found it." As Dave said, the internest barely knew Shawn's initial history, and the most he did with the various reports was scan them over and tell us everything looked fine. Despite commenting on the first day about how helpful the medical write-up from his doctor in Chicago was, he didn't seem to have read much of it. His logic also floors me - his original explanation for wheezing and shortness of breath was that Shawn had asthma - then after testing for asthma he reports "you don't have asthma, so you're fine." But what about the fact that these symptoms are still there and that they now aren't explained by asthma? It just felt like he wasn't doing anything other than looking at little pieces, the big picture of a real person sitting there with a problem seemed to be missing. Where was the intellectual curiosity if not the human compassion? I'm afriad in our dealing with him, we saw neither.


Those of you who know me know that I'm rarely speechless, but in his office I found it hard to form a sentence. I actually found myself stuttering at one point when trying to ask a question.


So where do we go next? As Dave said, we are so incredibly blessed to have a doctor here that does not believe that Shawn is fine and all his symptoms are harmless or normal. I think Shawn put it best when he said he wanted to go back to Chicago "where we have a doctor who actually cares." I seriously do believe he has been sent to us as an answer to my prayers. I will never be able to fully express how grateful we are to have him as Shawn's doctor. He has always exhibited both the compassion and the intellectual curiosity which makes him such a fine doctor. I just wish we could have found more like him at the Mayo who could have helped him in his search for the best way to treat Shawn.


After discussing it all yesterday, we've decided to go ahead with a biopsy of the thymus. Meanwhile, Shawn returned to school this morning and will spend this next week trying to forget about last week's ordeal before coming back here for the biopsy, sometime the week of the 24th. It will be a needle biopsy, performed as an outpatient procedure at Northwestern. I'll put more details here once I know them.

The Mayo Mystique is a Myth

The Mayo Clinic is supposed to be the pinnacle of American medicine. They claim to have the best doctors and the best patient care practices, along with the best technology. They do have technology in abundance, wrapped up in very pretty buildings. However, nothing we saw over the past week indicates that their doctors are skilled diagnosticians or capable of effective patient care.


The literature provided by the Mayo Clinic emphasized the importance of patient participation. Three of Shawn’s doctors dismissed his questions with condescending remarks. They provided little or no insight into the diagnostic tests they had ordered and spent no time discussing the results. There is absolutely no excuse for how he was treated by these so-called doctors. The internist coordinating Shawn’s care and the neurologist gave no indication that they had read his records as they made numerous comments amply demonstrating their ignorance of his history. Only one physician, the pulmonary specialist in the allergy clinic, treated Shawn with respect, answered his questions, and took an interest in his case. Twenty five percent is a failing score no matter what the game, but in patient care is a disgrace. It indicates that Mayo Clinic’s reputation for patient orientation and care is vastly overrated.


The internist responsible for coordinating Shawn’s care was one of the most inept clinicians I have ever seen. He never took the time to digest all the medical records Shawn brought with him. He did not even take the time to review the exhaustive medical history questionnaire that the Mayo Clinic sent for Shawn to complete prior to his first appointment. The only questions he asked were based on the major symptoms Shawn wrote on a card in the waiting room. He never bothered to order a review of the CT scan from Northwestern showing a node on Shawn’s thymus. His working hypothesis was that most of Shawn’s symptoms could be accounted for by asthma, sleep apnea, allergies, and maybe a neuromuscular disorder like multiple sclerosis. After all those possibilities were disconfirmed, he blithely said everything looks good. He even had the audacity to suggest that maybe anxiety was responsible for Shawn’s flushing spells, blood pressure spikes, chest pain, and shortness of breath. If this pathetic excuse for a doctor had bothered to read the medical history, he would have understood why this simpleton hypothesis was rejected long ago. Ignorance of a case history is incompetence regardless of whether it stems from arrogance, disinterest, or insufficient time.


The Mayo Clinic also emphasizes the importance of involving loved ones in your care, encouraging patients to bring someone with them to ask questions, relate observations regarding symptoms, and help remember instructions. The internist coordinating Shawn’s care told him there was no need to include us in the initial evaluation and only grudgingly included us in the follow-up visit to discuss findings.


The Mayo Clinic also prides itself on taking a team approach to a case and integration of care. This is clearly another platitude masquerading as reality. Teamwork is not ordering evaluations from specialists. Integration of care does not consist of reading (and misinterpreting) summary reports from specialists. Here is my favorite example of teamwork and integration of care from our five worthless days at the fabled Mayo Clinic. The pulmonary specialist in the allergy clinic looked over the results from testing, saw no evidence of asthma or any allergic component to Shawn’s symptoms, but was very concerned about pulmonary weakness. He took the time to call the internist coordinating Shawn’s care to discuss the finding, noting that it should be followed up and could be due to a nasty variant of myasthenia gravis. The internist expressed annoyance that the pulmonologist had called him when he was “in the middle of doing something else” and dismissed the pulmonary weakness as probably just a “red herring.”


Here is my list of the top ten greatest twits from Shawn’s visit to the Mayo Clinic.


10. The internist told Shawn not to worry about his focal abdominal pain and bouts of diarrhea; it was probably irritable bowel syndrome. “My son, who is twenty-six, has irritable bowel syndrome and he gets relief from Metamucil. I have irritable bowel syndrome, too. Nothing to worry about.” The irony of knowing more about your doctor’s medical history than he apparently knows about yours is too great to pass up.


9. On Monday, “I will send your scans down to radiology to be read immediately.” On Friday, “ Well, I guess those scans should be sent down to radiology.”


8. “The flushing and other symptoms could be due to anxiety.” Never mind the medical history that argues against that possibility. Well, doctor, how do explain the fact that they occur in his sleep and during innocuous activities? “I don’t know – I have not seen that.” How do account for the recent change in the flushing pattern with the redness greater on one side of his body? (Hint: You told Shawn at the start of the week that asymmetric flushing could be due to something like multiple sclerosis.) And all that bleeding and bruising?


7. The neurologist suggested that his muscle weakness might just be due to inactivity and should be helped with exercise. When Shawn pointed out that his blood pressure and heart rate skyrocket with physical exertion, she said, “oh really, you really should have that checked out.” Thanks for reading the medical records in that pretty folder.


6. Hypertension? “The six hour average levels look fine. Don’t worry about those spikes. They are only a problem if you have an aneurysm.”


5. The endocrinologist spent a few minutes with Shawn after having a medical resident conduct the history and physical examination. Her words of wisdom were priceless. “There are no other tests that should be done at this point. Why would you want to have more tests?”


4. Pulmonary weakness? “Probably just a red herring.” How silly of the pulmonary specialist to be concerned.


3. “ It looks like you don’t have asthma or sleep apnea, so everything looks good.” But, but, but those were the things you thought might account for Shawn’s hypertension, tachycardia, and respiratory symptoms…


2. “Don’t worry about communicating the results to your hometown doctor. I talk to hometown doctors all the time.” Be sure to tell Shawn’s hometown doctor why you did not read the medical records. I am sure he will find your cursory knowledge of the contents to be extraordinarily amusing.


1. The parting words of wisdom from his primary care doctor: “If there had been something seriously wrong, we would have found it.” I seriously doubt it.



The Mayo Clinic has beautiful facilities, friendly support staff, and the best technology.  Too bad the medical care Shawn received fell far short of its reputation.

Shawn has been blessed to be under the superb care of his physician in Chicago. I shudder to think where we would be without this doctor. He has been the answer to our prayers. The Mayo Clinic was just another trial to endure.

Friday, March 14, 2008

leaving here tomorrow

I'm not sure that we actually learned much here this week other than there are lots of other things that could explain away some of his symptoms and he doesn't have any of those.

Meanwhile we'll be following up with his Chicago doctor when we get home. I wish I could say that our experience here at the Mayo was a good one but I'm afraid we all found it rather frustrating and dismissive.

Thursday, March 13, 2008

More tests...


Neurology added a few more tests to the schedule; more blood yesterday, an EMG today and then a return visit to Neurology this afternoon.

I've been taking photos during some of the many many hours spent in waiting rooms. You can see them all at http://sheri.smugmug.com/gallery/4497512_xiEDb#264981001.

Tuesday, March 11, 2008

Too tired to eat...

What a fun day - started by me waking Shawn up with drinks in bed - the second round of the stuff he had to drink, along with the lemon chaser. (I bet none of his friends are getting drinks served in bed during their spring break).

They couldn't put him to sleep today for the colonoscopy because his blood pressure was too high - so they gave him drugs instead. Free drinks AND free drugs, what better way to enjoy spring break?


The drugs may not have put him completely to sleep but they certainly made him loopy - came back to the room and ordered dinner, but he didn't get a chance to eat much before he fell asleep.


Monday, March 10, 2008

The Search for Lemons

Tonight and tomorrow morning, Shawn gets to drink lots and lots of fun medicine to prepare for the colonoscopy. In the instructions, it mentions that sucking on a lemon before drinking it will make it taste a little better. So just before he had to start the medicine tonight at 6, I went in search of lemons.


The cafeteria was just closing, but also I don't think I saw lemons there earlier today. Found nothing at the drugstore I found the next building over, nor any of the fast food places nearby. went back to the hotel with a few bottles of Sierra Mist for him, but no lemons.


As he took the first of tonight's 4 doses, my foggy brain finally came up with the perfect place to get lemons - in a bar! We're staying at the Kahler Inn and Suites, which has no bar, but the Kahler Grand Hotel a block away does - so off I went in search of lemons.


A kind bartender at the bar handed me a few lemons. Shawn informs me that it does make the medicine taste slightly better. I think finding lemons may have been the highlight of my day.

Day One at the Mayo

Pretty busy day so far. Started with checkin at 7:15; then Shawn saw his primary doctor and got his schedule.

Today:

  • primary doctor
  • 9:20 blood tests
  • 10:00 allergy tests
  • 1:00 pulmonary function with methacholine
  • 2:20 electrocardiogram

Tuesday:

  • 2:30 colonoscopy (unfortunately, this means that as of 2:30 today, he's on a clear liquid diet until this is over)

Wednesday:

  • 7:15 6 hour blood pressure
  • 10:00 pulmonary function lab for a home overnight test
  • 1:15 endocrinology consultation
  • 2:45 neurology consultation

Thursday:

  • 8:15 ear/nose/throat consultation

Friday:

  • 2:15 asthma/allergy clinic

Final consultation for allergy/asthma is for the moment scheduled for next Tuesday and then a final appointment with his primary doctor also on Tuesday.

However, they have a system here where if you have at least two free hours, you can try to go to an appointment early; if he can do that Thursday and Friday, he may be able to get finished by the end of this week instead of having to wait till next Tuesday.

His doctor here commented on the write-up that he got from his Chicago doctor - said it was great and he wished all doctors would do something like that.

Saturday, March 8, 2008

Nice wheels!





We'll be traveling to Minnesota tomorrow in style - Shawn is the proud
owner of a brand new 2008 silver Prius! At least the drive will be fun.

Tuesday, March 4, 2008

"Made it Through Today"

As some of you may know, one of my all time favorite artists is Keith Urban.  I was going through some old songs and playing guitar and found myself playing this song tonight and after thinking about it, realized that it's the perfect sentiment for my life at the moment.  Constantly I'm asked how I'm doing.  When I think about it, there's really not a good answer.  The replies that run through my mind are usually a little less than polite because my frustration with this entire situation is getting to me.  However, the real answer each day is that I'm grateful to God for getting me through the day which is truly a blessing.  Here are a few passages from the song:

As I turn out the lights
And bow my head to pray
The answered prayer I'm thankful for
Is I made it though today

Now I'm not trying to change the world
I'm just trying to find my way
And I stumble now and then
But I made it through today

The deep and honest truth is that my life at this point consists of understanding and perseverance.  Understanding that while my life at the current moment consists of pain and trouble doing the everyday activities, I still have a life worth being thankful for.  I have a girlfriend who is a rock in my life and without her, I wouldn't be as strong and happy.  She's made me realize that no matter how bad some parts of life can get, there's always something else that can keep a smile on my face.  I thank God for her everyday.  My students who have worked incredibly hard and have come from a group of fighting individuals to become a community.  They have all pushed themselves and continue to push themselves to do better which is all that I ask.   I ask them to be the best they can be and they've helped me apply that to my life.  My family who has been here through it all and I can't be grateful enough for them either.   

I may stumble now and again and I'm certainly going to have my moments of pure anger and frustration but I will always thank God that "I made it through today".


Thursday, February 28, 2008

Mayo Clinic, March 10

Looks like we'll be at the Mayo Clinic on March 10. Between now and then we're doing one more urine test this weekend. Shawn's now off both histamine blocking drugs for this test.


I'm going back to Bloomington on Saturday and will stay till Thursday when Shawn will start his spring break. (Between high-speed internet and my phone, I can work just as well there as anywhere.)


Dave's staying in OP with the dog, driving down Wednesday and we'll all come home Thurdsay. Then off to Minnesota on that Sunday, March 9. I think it's about a 6 hour drive from OP.


Probably won't be much to report between now and then - but continue leaving your greetings for Shawn on the Guest Book. Hopefully we'll have more info in a few weeks...

Tuesday, February 26, 2008

The picture just continues getting more and more confusing

Shawn woke up this morning and was washing his hands when one of his friends looked over and asked what happened to him - his left wrist and back of his hand were both purple and swollen; like someone beat him with a bat. Completely painless. He went to the clinic where they were rather freaked out; they called his doctor here in Chicago and discussed it; took some blood tests and sent him home. And of course just like every other test this kid has had thrown at him, the initial results are normal - CBD and SED rates both normal.  Full metabolic panel still pending.


His doctor came over tonight with lots of info about what he's been doing and who he's been talking with (which includes lots of very smart people, including the head of endocrinology at Childrens Hospital and a carcinoid expert at Northwestern); but not much in the way of answers, because there just isn't any data to give us a clue. Last week's urine and blood tests show nothing. He discussed this with the lab at the Mayo, they said there is a small possibility the test was influenced by the drugs Shawn's on; so at this point he's off both the antihistamines (Cyproheptadine and Ranitidine) for a few days and will then repeat the urine tests.  So he's also now back on the restricted diet.


There is just no data yet to help point to a definitive diagnosis. There are other tests that can be done but we don't want to go off doing more invasive procedures without some data as to whether they are necessary. The last thing we need is complications from a procedure that didn't need to be performed.


We originally had an appointment at the Mayo for March 10; it hasn't been cancelled but it's currently with a general internist. Tomorrow Shawn's doctor will be calling them to see if they can switch him to a different doctor, possibly see him earlier and/or suggest further tests to be performed here first,  have any other suggestions, or all of the above!

Thursday, February 21, 2008

Make sure to sign the guestbook

About all we can do right now is wait for the next round of test results to make their way back to us from the Mayo Clinic... in the meantime, I've added a guestbook to this site so we can hear from all of you who are waiting along with us... please go and sign the guestbook and let us know who you are!

Wednesday, February 20, 2008

Zeke's thoughts on our road trip

While Zeke was VERY well cared for while we were gone, I believe he
made his thoughts about being left behind pretty clear this morning.

Tuesday, February 19, 2008

More get well wishes




Shawn is teaching a Hebrew class at the local synagogue in Bloomington - when he returned to IU a few weeks ago he received cards from the kids in his class.  I scanned a few of them while I was there this weekend.  

Monday, February 18, 2008

Next set of tests on its way...

Shawn is off the restricted diet, and the next round of his urine and blood is on its way to the Mayo Clinic. Meanwhile, for lunch he had a fruit drink with pineapple in it, and for dessert he had a banana shake. It's funny how being told that you can't have something makes you want it so much. (I wonder why that never works for broccoli or brussel sprouts?)

One more day in Bloomington

Dave and I have decided to stay one more day in Bloomington, will return to Chicago tomorrow. (If I had my choice, I'd just stay down here but I don't guess that's a very viable option.)

Three weeks till spring break. It looks like that will be the target date for surgery, either in Chicago or Minnesota.

Saturday, February 16, 2008

Update from Shawn

So I've been asked a lot how I'm feeling and I'm not sure if I can really say how I'm feeling. When I went to the lab I picked up the lab order form for Monday and under the diagnosis, it was written "neuroendocrine tumor". I don't know what it is but every time I see that, it hits really hard and leaves me a little frazzled. There's definite frustration in knowing that almost always, these tumors are malignant so after surgery, I'll have to follow the medical protocol for cancerous tumors which is less than fun. However, at this point the thought of chemotherapy is a good one because at least I'll be getting better. Right now, the big frustrations are the pain, blood pressure spikes, loss of hair (not sure what that's from but my hair has been thinning and falling out in places particular in my legs), bloody noses, easy bruising, etc. I'm sure I'm coping as any person in this situation would- some days I'm angry at the world and let my frustrations get to me. Other days, I cope fairly well realizing that I'm lucky to be where I am and to have the kind of people in my life that I do. One of the skills I acquired over time is pretending like everything is fine even when I'm in worlds of pain. While this can be a great tool sometimes, I sometimes let it get to me and then get this false sense of security that everything is fine when it clearly isn't. I will be happier than anything when this is all said and done.

Friday, February 15, 2008

ROAD TRIP!

Since I have the day off on Monday, and since Shawn has to lay low this weekend, Dave and I are heading to Bloomington tomorrow. We'll be staying at a Homewood Suites with Shawn - it has a full size kitchen (and most importantly for the urine collection, a full size refrigerator).

Many thanks to Lee and Bob for taking the dog, and to Lauren for taking over the meeting I have at temple on Sunday.

Shawn's doctor has been extremely busy

He laid down the law for the supervisor of the lab responsible for the blood and urine tests this weekend. When Shawn picked up the collection containers, the supervisor made it clear that the message was heard, loud and clear. I have a feeling this is probably the first time the lab surpervisor has ever gotten this much of a pep talk on collection protocol. Given the importance and expense of these "exotic" tests, Shawn was told to make sure the urine samples are always refrigerated, which means that he will miss teaching Hebrew school and the Michigan State basketball game. Something tells me Shawn will make up for lost time next year with all the sports and social activities he missed this year.

The key word was OPTIMISM. As with his email to us, he told Shawn he strongly believes that surgical removal of the tumor will be successful in getting Shawn back to health. His optimism is very welcome news.

More tests this weekend - spring break in Minnesota?

More tests being done this weekend, two urine collections and then more blood tests on Monday. His doctor is corresponding with the co-chair of the Mayo Clinic, and also continues to get input from his colleagues at Northwestern. He's optimistic for a diagnosis and then a surgical cure, which sounds mighty nice to me.

He also said not to cancel our appointment at the Mayo Clinic on March 10. So we may be spending spring break in Minnesota, hopefully by then it will be for them to look at all the results and get going on that CURE part.

Thursday, February 14, 2008

Thoughts and prayers

We have been overwhelmed by the number of people who have Shawn in their thoughts and prayers. All that warmth helps keep our hopes high that Shawn's condition is easily treatable and he will soon be back to living life to the fullest. Thank you for all your support.

Happy Valentine's Day!

Wednesday, February 13, 2008

So just how IS Shawn, anyway?

Lots of people asking this all the time, it's not always an easy question to answer. He has his ups and downs. Still seems to be in pain parts of the day - mostly complaining now of back pain or headache. I think the belly pain has been less severe now, at least the times I've talked to him. I'd say the worst part for him right now is exhaustion. The last few days especially it seems like whenever I speak with him he's just so lethargic. But today he sounded MUCH better so that's very hopeful. He's on yet another different blood pressure medicine this week, perhaps we've finally found the right one?

Monday, February 11, 2008

Back to a restricted diet

Shawn's back on a restricted diet this week - he needs three days before the next round of tests can begin. These tests include platelet serotonin, 24 hr urine serotonin, and chromogranin A.

The foods he must avoid are:
Foods - avocados, pineapples, bananas, kiwi fruit, plums, eggplants, walnuts, hickory nuts, pecans

Drugs - acetaminophen, coumaric acid, guaifenisin, mephenisin, phenobarbital, reserpine, acetanilid, ephedrine, methamphetamine, nicotine, phentolamine, phenmetrazine, caffeine, flourouracil, melphalan, methocarbamol, phenacetin, mesalamine* corticotrophin, ethanol, imiprimine, levodopa, MAO inhibitors, phenothiazines, aspirin, isoniazid, gentisic acid, methenamine, streptozotocin, heparin, methyldopa

Sunday, February 10, 2008

Update after conversation

Not much else to say other than after speaking to the doctor today, he said his working diagnosis is a thymic carcinoid which should be very treatable.  He said that after reviewing the CT scan, the possible masses in the abdomen are normal but the shadow in the thymus gland is what he and the other doctors think is a carcinoid.  We will continue testing and will hopefully know more soon.  I'm starting yet another new medication so that will hopefully help with some of the symptoms.  Hope to know more soon.

Friday, February 8, 2008

completely overwhelmed with gratitude

Shawn's doctor continues to be so incredible. He mentioned yesterday he was working on a letter he wanted us to look at before he sent it out; that he would email it to us. The email was sent this morning at 2:00 AM. I just finished talking to him tonight, I said "you must be completely exhausted," and he said after emailing that at 2, he had to be at an appointment this morning at 7 AM! At the end of our conversation I told him to get some sleep and he said "I'll get some sleep when you can sleep". What more is there to say? In all the many blessings we have he is certainly one of our BIGGEST ones.

On to today's news: he's had the CT scan reviewed by other radiologists (I think he said 4) and they all agree that there COULD be a shadow in the thymus. There is no more definitive scan that could be done to reach that area, the only other avenue would be a biopsy. But there are a few other tests that could help confirm before doing that - one is a urine test that's analyzed only at the Mayo Clinic, the other is a blood study that is not available in the US. He called the Mayo lab about the urine test, to find out details on how to collect the urine, but the lab is closed till Monday. So on Monday he'll get the details and then Shawn will be able to do the collection in Bloomington, and take it to the hospital to send to the Mayo. As for the other study, he (dr., not shawn) has an appointment on Wednesday with a carcinoid expert at Northwestern to see if there is a research facility in the US that might be able to perform it. (The guy is out of town till Wednesday.) So that might be a possibility as well.

All of you who are keeping Shawn in your prayers - add a prayer for Walter, his doctor. He's certainly in mine.

Reflection

I am sitting here in my lounge at IU right now thinking of a way to describe how everything is going and how it's been.  There are no words though that can really explain any of this.  The hardest aspect right now is trying to maintain a normal life here.  On top of that, the most concerning thing for me right now is not the pain and the doctors, etc.  The hardest part of all of this is the stress that it puts on the people I love.  I hate watching them suffer through this and I can't even begin to comprehend the pain they all must be going through.  I  will always be amazed at their strength and forever grateful for the love and support everyone's given me.  I can't begin to name everyone for their contributions but some of the people that stick out:
My mom and dad for their unwavering commitment, love and strength.  They have sat in every waiting room, stayed in the hospital with me, and done everything in their power to end this nightmare.
Arie has stood by me through all of this with more grace and strength than I could imagine.  I will never be able to thank her for how much strength she has given me through her undying support and kindness and I only hope that if I was ever in her situation, I would be able to go through it with even a small percentage of the grace that she has.  
The outpouring of support and prayers in all of my communities has been remarkable and I could never thank everyone enough.

Thursday, February 7, 2008

Accumulating the wisdom of many doctors

Another round of dead ends - the latest tests all came back negative. With no positive results to guide him, Shawn's doctor is not certain he's even going down the right path, and the tests to perform are getting more exotic and taking longer to get results. And because of the accuracy of the earlier tests we haven't ruled very much out at this point. He said one of the next things he'd do would take 2-3 weeks(!) and he wants to look into escalating a visit to the Mayo, where they might be able to do it more quickly in-house; also might possibly have access to other tests he doesn't. He's already been talking with one dr. at the Mayo, and said he's drafting a letter to send to some other doctors there as well as NIH.

Meanwhile, it sounds like he's had a very busy day - says he's talked to four other doctors at Northwestern about Shawn today. (I asked Shawn if his ears were burning, as it sounds like he was being discussed most of the day). And he has two others he's talking to tomorrow. The upshot of this is that there are more tests he may want to perform before moving this to the Mayo - some of which can be done in Bloomington with shorter turn around times. At the very least, we are quickly accumulating quite a lot of very smart doctors who are all thinking about Shawn's case, which has to be good.

So Shawn, maybe your best birthday present of all will be that one of these doctors will find the right test that will bring us to an answer - that would be an even better present than an iPhone! :-)

HAPPY BIRTHDAY SHAWN

What a difference a year makes

Today being Shawn's birthday, a little reflection is in order.

A year ago, Shawn turned 18, was counting the days until he could be off to IU, and was feeling on top of the world. Today, Shawn is 19, wants to be nowhere but IU, and is feeling that the world is on top of him. I can only hope that by this time next year, all of this endocrine dysfunction will be long behind him and he will be having the time of his life as a sophomore at IU.

No more having to monitor blood pressure and other symptoms.
No more pains in the gut, chest, and head.
No more having to take hands full of medication every day.
No more blood draws.
No more urine collections.
No more scans.
No more doctor's visits.
No more ER visits.

Happy Birthday, Shawn. Here is hoping that the coming year brings health and happiness.

Sunday, February 3, 2008