Day 116.....the good and the bad

Sunday, January 13, 2013

Sean and Luca and Dillon's best friend Finn arrived yesterday afternoon (Saturday).  Dillon and Finn are so happy to be together after a 5 month absence.  They took up right where they left off; laughing, talking, having fun.  Dillon has to monitor his energy output and today he told Finn he needed a nap; so Finn and Luca went downstairs to play while Dillon rested.  Luca is included in their fun quite often but Sean and I try to pull him aside for some " alone time" and that gives the big boys time alone as well.  The apartment sure feels tiny and messy with these 3 extra people.

Ok....test results.

The bone marrow biopsy was PERFECT!!!  There are no cancer cells and all of the components that are supposed to be there are.  It showed 100% donor cells; which means his old immune system/bone marrow is not being allowed to rear its ugly head and function in any way.  This is assurance that it was effectively eradicated and the new immune system is beginning to function.

The upper endoscopy and flexible sigmoidoscopy ( aka, the scopes) showed healthy gut all the way through via both the visual check, as well as the biopsy results.  The puzzle piece regarding why he still cannot eat much,drink much, and gets nauseated after meals is still missing.  It may partly be related to the below info....so keep reading.  However, the GI team may decide to do some more testing on that front.

YAHOO!!!!!!

Now, the bad.....let me start with the fact that this info was dumped in my lap friday evening over the phone by a doc who speaks fast and is not always clear and concise.  During the scopes they took a bunch of blood work....things that are not usually tested unless unusual circumstances present themselves, which in Dillon's case with the prolonged trouble with his belly.  My best explanation is this.....his vitamin D level is almost nonexistent.  People do get low vitamin D but this level is extreme and almost unheard....of course it is...this is Dill Pickle we are talking about....his system has to throw a curve ball every chance it gets :)). He also has low zinc and calcium.  Low vitamin D that is either severe or prolonged causes bone problems, as in soft, spongy bones that easily break and can be deformed if allowed to grow under these conditions if they can grow at all.  So friday evening, in a snow storm, Dillon and I headed to the hospital to get more labs drawn (there is a remote chance that this crazy low level was lab error), as well as x-rays of his hips, knees, and wrists to evaluate his bones.  There is treatment for all of this, namely more pills.  We will get the results of the above tests, more information,and a treatment plan on Tuesday....after Finn leaves.

Until then we are carrying on as if all is well, enjoying the days with our visitors, and we will deal with all of this next week.