6/10/16 Update 2

We got a PICC line put in this evening to allow easier access for the numerous blood draws Cole will continue to need so he won't have to continued to be poked all the time as well as administer various medications he'll need. He has been poked more times than I care to count so it's good that this will eliminate some of that.  All he keeps saying is he doesn't want to keep feeling pain. Breaks our hearts to hear. 

Also got an MRI from chest to pelvis tonight to assess the soft tissues in those areas. He was fully sedated with a tube so he will probably sleep well tonight. We will hopefully hear some MRI results this weekend if possible. 

As previously stated, HEMOC is leading the charge so we are officially switching to that team as his coordinating team unfortunately (glad they're helping, we just don't want it to be a HEMOC issue). The other divisions will still be on his service and helping with diagnoses, but the way it is looking he will ultimately be treated by HEMOC. Not what we want to hear, but we are very optimistic that if these are indeed tumors as they suspect, that they are benign and "easily" treatable. 

Surgery is still probably in his future and we pray they won't have to remove part of his lung or have lasting implications.  Because he is still a mystery we just don't know what the treatment plan will be.  His body is so incredibly inflamed but they are hesitant to start treating that with steroids as they don't want to "mask" any possible triggers. They plan to start with some more mild anti-inflammatory meds and see how he responds.  They all agree we need a diagnoses before we throw treatments at him that may help or make things worse. 

Within the various divisions on his service the attending doctors assigned to help all seem to specialize in "odd/rare/weird" things within their specialties. This is good and bad - good that there are specialists like this focusing on him, but bad that we have the mystery case people haven't seen before. 

This weekend will most likely just be a "be patient and wait" weekend as many of the tests/consults will likely take a week to get back. Doubtful we'll be leaving any time soon, but hopefully we'll get some info next week. 

Cole has ups and downs, low hemoglobin and energy so he's pale, and still spikes fevers every day that we try to control. He has pain sometimes but he is so incredibly tough. We try to keep him in good spirits and motivated but understandably so, he is so tired of everything and just wants to go home.  We want the same and are ready to have our fast, energetic, sportster back.  It will be a while before that happens, but we know it will. 

As always, please keep Cole in your prayers. We appreciate everyone.