Monday, January 4, 2016

back again

Today it was back to Mayo where we met with Dr. K, a diagnostic specialist. 

He told us that he uses four buckets to categorize initial diagnosis: autoimmune, viral/infectious, cancer and "other".

We sort of had our hopes pinned on the first two - which he was quick to eliminate, saying that it didn't appear to be autoimmune and if it were infectious it would likely have blown up in our faces by now.

This leaves two buckets.

No need to even point out why this sucks.

Our glimmers of good news lie in these things:
* He's been X-rayed and scanned and tested for everything they can think of, and everything has turned up negative.
* Viruses are always tough to detect and they always remain a possibility
* The small module on his adrenal gland. Although everyone has ascertained it to be an absolutely incidental spot, if it does turn out to be the culprit, he can have the gland removed without much drama.
* Nobody sees or feels anything on his lymph nodes.

Basically, in absence of anything obviously incriminating, Dr. K, has decided to take another look at these things:
* His iron deficiency, apparently it's quite rare for a guy his age to have it, and it could indicate something else.
* His very slightly elevated white cell count.
* Another look at his liver
* An upper GI scope ( and lower just to make sure)
* A cortisol/endocrine test for Cushing's Syndrome
* A possible sugar PET test

We will be at Mayo all week just to get through the barrage of tests he'll need. In the meantime he is weak, fevered, tired, and discouraged. It's fair to say that we are all a little discouraged. We don't even know what to hope for - do we hope they find something we can fight? Do we hope they find nothing?  We don't know. Right now we just hope to get through the week. His tests are scheduled throughout the day, starting as early as 6:45 am and running until late afternoon. 

Our immediate concern is just getting Yoda to and from school during Rico's appointments. We've had some wonderful help, but this juggling new normal is trickier than we thought- especially with a three-hour daily commute. I'm sure we'll find some balance. We got home tonight and Kooka had done Yoda's homework with her (and assessed it), Punk had started dinner and made sure they had after school snacks. Yoda fed the dog and made sure to give dad some extra hugs when he came home.

We're not sure what's happening, we just keep the love flowing and hope it's enough.





6 comments:

Treats said...

I'm hoping you get some answers quickly. It took 6 months to determine my autoimmune adrenal failure. It was brutal. Once they figured it out, things got better. Not always great, but better. Give the kids my cell # or text me if I can do anything for you. Thinking of all of you.

Melanie said...

Constantly refilling the fairy dust jar with hope that you'll get an answer soon and resolve whatever the hell is going on... And be able to move on. xxoo

j said...

Thanks guys. Fairy dust seems to be a good option.

Elizabeth said...

I hate to say it, but if a PET scan hasn't been done, it might be a good thing to push for (hard). It comes after a cancer diagnosis to see how bad. Problem is, it can find otherwise impossible cancers. When my mom was sick with mysterious illnesses for five years, it was never something we knew about. She died of a curable cancer - they just couldn't find it. Her symptoms were sort of autoimmune, sort of endocrine, sort of a lot of things. I firmly believe a PET scan earlier would have saved her life. And knowing might be better than not. We are praying and hoping for answers soon! You guys bring so much joy to us - gotta love all the laughter you've taught us to treasure.

Elizabeth said...

I hate to say it, but if a PET scan hasn't been done, it might be a good thing to push for (hard). It comes after a cancer diagnosis to see how bad. Problem is, it can find otherwise impossible cancers. When my mom was sick with mysterious illnesses for five years, it was never something we knew about. She died of a curable cancer - they just couldn't find it. Her symptoms were sort of autoimmune, sort of endocrine, sort of a lot of things. I firmly believe a PET scan earlier would have saved her life. And knowing might be better than not. We are praying and hoping for answers soon! You guys bring so much joy to us - gotta love all the laughter you've taught us to treasure.

j said...

Thanks. It's on our list. Hopefully soon !