Day 101......

Saturday, December 29, 2012

YAHOOO  Big D, Mr. Pickle, Dillon Jace, DB.....day 100 is in the rearview mirror!!!!

It is unbelievable that it has been 100 days since that fateful day in September when those magical cells of golden power and life dripped into my boy's body.

Clinic this week was a VERY thorough exam.  It took over an hour, just the exam and questioning of Dillon.  Then there were the 7000 questions I had come up with in the past week as day 100 was dancing in the distance.  I warned Dillon that I had lots of questions and I apologized to him in advance if it was embarrassing to him in any way.  As the doctor began his visit, as he always does, he addressed Dillon first.  He asked...."Is there anything that you are worried about?"  After a brief pause and the oh so classic look to the side that our Dillon gives when he is really thinking about something....."Nope" was all he could conjure up.  Then the doc winks at me and asks Dillon...."Is there anything that your parents are worried about?"  And with a wholehearted, big belly laugh and a mischievous sparkle in his eye Dillon said..."Yes....EVERYTHING!!!!"  To that the doctor responded....."Perfect, everything is right on track!"

We have a really good rapport with this particular doctor as he was one of the main doctors on service during the hardest part of Dillon's post transplant complications.  He was there for the code blue day where we thought we had lost him, he was there for the over-hydrated/shutting down kidneys and extreme swelling and jaundice, he was there for the horrific mucositis and vomiting of massive amounts of blood every day, as well as being there from the beginning to the end of the horrible abscess that occurred on Dillon's behind. So, needless to day, we really trust this guy, we like this guy, we have a friendship with this guy.  Having him as our day 100 examiner was a blessing.  He was so incredibly patient (with my 7000 questions) and thorough, so personable, joking around and laughing with Dillon a good part of the time.  It was a pleasure and a comfort.

The outcome.....you ask??????

Dillon is doing FANTASTIC!!!!!  The doctor went over every system in the body and Dillon's only issues are all pretty minor.

He has a continued mild skin rash and irritation. They have decided it is most likely NOT GVH of the skin at this point, which is a plus.  His nails were actually  killed off during the radiation and chemo so the new nails have been pushing his old nails off as they grow.  They are about half way there and this means that Dillon feels a pressure and a pulling on each nail as if it is going to actually rip off (the old part that is on top of the very thin, very tender new part).  The doctor suggested keeping the nails intact, bonded together, and solid by using a clear nail polish.  Then the new nail will just keep growing and eventually that old dead part will fall off but it will happen when it is closer to the end of the nail, as opposed to being in the middle where trauma and discomfort will occur.

Dillon's other issue is still his belly and the GVH.  This is MUCH improved but we are still cautiously optimistic.  He began on 27 mg of steroids twice a day with a steady but slow decrease every week or two.  After this visit he was decreased to 9 mg every other day.  They suspect we will continue on that dose for a couple of weeks and then he will be off the steroids.  The two weeks following that will tell whether or not the GVH in his gut is cured.  If symptoms begin to return, then the likely thing will be another endoscopy and biopsy to see if it is in fact lingering GVH or if it is just his gut continuing to heal, adjusting to life without steroids, and still being  traumatized.  Dillon was able to maintain his weight this week!!!  YIPPY!!!!  He continues to work diligently on eating enough calories all day every day.....and the hardest part is still getting in enough fluids, so at this point we are continuing the overnight fluids to make sure he is well hydrated.

What is the next step you ask?????

On January 7 or 8 (don't have the appointment confirmation yet), Dillon is going to get his post day-100 bone marrow biopsy, spinal tap, and port access and flush (which has to be done monthly and Dillon dreads it, so the doctor said it could wait an extra week and they would do it when he is under sedation for the bone marrow biopsy).

The above steroid taper will occur.  If Dillon's belly is okay off of the steroids for 2 weeks, then a taper of some of the other meds begins.  We are REALLY looking forward to this!!!!  The Pickle is so incredibly tired of swallowing pill after pill after pill day in and day out.  Not only will he be slowly getting off some of the meds but some of those meds have their own side effects and those will also decrease as the meds decrease....so this is a really big deal!!

As you can surmise from the above commentary.....I don't think we will be home in mid January like we hoped.....although we pretty much knew that as soon as the gut GVH was discovered.  Any little extra bump in the road pretty much guarantees a delay in going home.  Lets hope it is near the end of January, but if things don't go well with the discontinuation of the steroids then we will be longer than that.  It can feel a bit discouraging at times....to imagine an even longer stay in Denver.....but we are way closer to getting home than we were in August so we try to remain optimistic and hopeful and positive.  I would much rather stay an extra month and have Dillon stable and off more meds than to go home and feel nervous and worried (more-so than I will be anyway (wink wink).

Big D's spirits are high and his energy and strength are slowly increasing each day.  His zest for life, his personality, his motivation, his humor are all coming back. I swear this is happening in the past week or so and I suddenly feel like the "old Dillon" is reemerging.


My parents are here for our "second Christmas" and the kids are really enjoying the extra attention.  Luca is doing very well.  He is heading back to Santa Fe on Tuesday with my mom and dad....Sean is leaving tomorrow as he has to get back to work. 

Tonight......DENVER HOCKEY!!!!!!