Saturday, November 29, 2008
in B-town with Shawn
Thursday, November 27, 2008
giving thanks
Friday, November 21, 2008
...and back home!
Bloomington Hospital
Monday, November 17, 2008
In the presence of greatness
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
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
All in all a very nice night! See more photos here.
Monday, September 29, 2008
L'Shanah Tova Tikatevu
Sunday, August 24, 2008
Shawn's Room
Friday, August 22, 2008
First apartment
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...
Friday, August 15, 2008
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.
Monday, July 28, 2008
Where do all the dead pills go?
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
Sunday, June 29, 2008
episodes not epileptic; atypical migraine with autonomic features could be considered
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
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
Wednesday, June 11, 2008
Home Sweet Home
Happy Hour Part II
Tuesday, June 10, 2008
taking a walk
Happy Hour
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?
Here we are
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.
Sunday, June 8, 2008
no cell phone this time
Saturday, June 7, 2008
more urine testing
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
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
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 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
Saturday, May 3, 2008
Springtime
Shawn's Back Home!
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
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
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
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...
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
Tuesday, April 1, 2008
Happy April Fools...
Inconclusive
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 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.
Saturday, March 29, 2008
anatomy lesson
Friday, March 28, 2008
Many Thanks
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
barroom brawl - and I think he lost.
Procedure went fine
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
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
hour till they are ready to start Shawn.
Delay
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
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?
Tuesday, March 25, 2008
Biopsy Re-Scheduled - 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
save me, and I shall be saved,
for you are my praise. (Jer. 19:14)
Friday, March 21, 2008
Biopsy Scheduled
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
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
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
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
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 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
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...
Monday, March 10, 2008
The Search for 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
Tuesday, March 4, 2008
"Made it Through Today"
Thursday, February 28, 2008
Mayo Clinic, March 10
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
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
Wednesday, February 20, 2008
Zeke's thoughts on our road trip
made his thoughts about being left behind pretty clear this morning.
Tuesday, February 19, 2008
More get well wishes
Monday, February 18, 2008
Next set of tests on its way...
One more day in Bloomington
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
Friday, February 15, 2008
ROAD TRIP!
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
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?
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
Happy Valentine's Day!
Wednesday, February 13, 2008
So just how IS Shawn, anyway?
Monday, February 11, 2008
Back to a restricted diet
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
Friday, February 8, 2008
completely overwhelmed with gratitude
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
Thursday, February 7, 2008
Accumulating the wisdom of many doctors
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! :-)