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...

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!

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!

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.

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.  

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.

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.

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.

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!

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?

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

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.

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.

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.

Get Well Wishes

Tests still cooking

A few tests are still outstanding (or 'cooking' as his doctor says) at this point, one of which is consistent with how well the current medication is helping his symptoms - and also would be easy to treat - I'm putting my vote in for that one!

The doctor just called Shawn, (on a Sunday no less) and is adjusting the level of one of the two antihistamines, currently things are better and his hope is that increasing the dose will help even more.

This morning at temple, I got some cards that kids in one of the Sunday School classes here made for Shawn. A few of my favorites:

• Roses are red, violets are blue, some people are sick, one of them's you!
• It's cold outside, yes it's very chilly, don't be silly, get better Shawn Gilley
• Rose are red, violets are blue, when you get your tumor removed, take it home with you.