Weekend Update June 24

Fun Stuff:  EiYiYi - I cannot believe it has been two weeks since an update!  thanks for hanging in there and remember you can register your email to get a reminder when the blog is updated (See the top of any page).  John and my Mom arrived Friday June 17 (just after Jim's B-day!!) in time for a family celebration with four families we have been close with since the kids were in preschool.  In fact the kids had their St Michael first communion party together and we thought it only fitting we have their St Michael graduation party together.  John, Jim and some of our friends went out on the boat Saturday leaving Mom, Emma and I to do the last minute touches on the house for the party.  Thank goodness John and my Mom were both there - great company and great help.  The brunch on Sunday was fun and lively with way too much food (never a bad thing).  All the families were exceptionally generous with bringing food and drink helping with every aspect of the party,  They probably would have folded my laundry if I asked.  How am I so blessed with the family and friends God put in my life.

John took me to the clinic Monday and we again talked through my treatment options with Avigan.  My dear friend Karen was with me earlier last week and both John and Karen kept me grounded as I was trying to wrap my head around what lies ahead. 

We all continue to enjoy the summer and I think Jim would love to have all the back to back beautiful days as boat days!!  We've been lucky to get out a few times this year.

Medical Update:  In the never a dull moment department...I am back in the hospital with a gram-negative-rod bacteria (impressive huh?-there is another name but damned if I can think of it).  It may have started from the inside in my gut or from the outside in a puncture in my lower leg (no clue how I got that).  The puncture looks like an insect bite and when dermatology did the skin biopsy at the site they removed a small black something which was suspicious of a bug.  Pathology is biopsing that to see if  it is a tick (hard to tell as a deer tick would be so small and engourged).  They also biopsied actual skin to determine I have that Gram Rod bacteria. 

I am being treated for both the bacteria and the lime disease and am feeling remarkably better since arriving back at Beth Israel Tuesday.  I came in via the emergency room on Tuesday night with high fevers and some GI troubles (we'll leave it at that).  Poor Jim and the kids were trying to keep themselves awake until midnight when we were finally moved to a room.  I was so out of it, Emma told me it took me 20 minutes to think of the word 'purse' - then I could not remember why I needed it.  Both kids were highly amused so even in the emergency room we find some fun.

Hopefully will get definitive results today re: whether I had a tick bite and have lime disease.  Tested negative initially for lime but one can get false negatives in the first two weeks of having lime disease so we'll watch closely.

Mine is a revolving door between the primary team, Infectious Diseases and dermatology.  Plus there is this weird guy who wants me to breath into a mouth piece that leads into a tuperware container of salt water which will apparently motivate my lungs to produce "ka ka" I cough up and the medical team can analyze.  Has not worked so far and when he asked me to repeat the test at midnight I said "um....no".  Moe is temporarily down but she is NOT out.

Truly Amazing that I feel and look pretty good.  I am getting lots of fluids and taking 3 (previously 4) antibiotics to get myself back to fighting shape.  My appetite is not great but I  am now able to keep food and drink down which is great after feeling so disastrously crummy on Tuesday and Wednesday.

Still looking at treatment options for the leukemia.  Dr Avigan submitted my name and some blood tests to those that decide who gets in an immune therepy clinical trial.  I should find out next week.  In the not to distant future is also a transplant from my Saint On Earth Donor.  Will go into more detail in next update. 

Please join me in prayers for the Demeter Family and their dear Mom Muncie who passed away this week and the age of 91.  The Demeters and Redmonds lived at each other's homes swimming in the summer and sledding in the winter and raising happy hell year round.  The best childhood imaginable.  What a legacy Muncie left in her 5 amazing kids (I mean they have it all- charm, intelligence, humor, beauty) and the whole  package of spectacularness made it to the next generation of grandkids.  God bless all of you.

Okay that is it.  I promise to not let so much time pass before the next update.

Thanks for checking in - Love Maureen