Happy, Happy, Happy

 

 

Having received several inquiries of how the Lukester is doing, I can take the hint that an update of the website is long overdue.  So here goes.

Luke is doing pretty good  He passed the 100 day post-transplant benchmark March 20.  Reaching the 100 day milestone Luke rang the bell in the clinic in celebration. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The parents celebrated the 100 days with Luke.

 

 

MDA clinic staff celebrated Luke passing the 100 day mark.   

 

 

 

 

 

 

 

 

 

 

 

 

But in the end I have to be honest, there were individuals that went beyond celebration to express their true feelings and admiration for Luke.  In particular Dr. Worth, who headed up Luke's transplant team, took the opportunity to let Luke know the warmth she felt toward him and the admiration she had of his character, maturity and intellectual acumen.  

 

 

 

 

But for all those celebrating there was one individual who was not impressed with Luke's accomplishment.......... but what can you do about it? 

 The docs use 100 days as a guideline for the likelihood of acute graft to host disease (GTHD).  After 100 days GVHD is possible but it is more likely to be chronic (skin eyes etc.) and not acute (kidney, liver, GI tract).

Since discharge from MDA in February (seems so long ago) he has visited MDA 2-3 times a week for labs and chemistry.  Initially he was getting blood and platelets weekly but the docs began to cut back on the transfusions to force his new bone marrow to do their job.  It worked.  It’s been several weeks since he has had any transfusion.  His blood counts are still below Joe average but they continue to creep up. 

 The biggest problem probably has been getting his Tacrolius (referred to in the transplant circles as Tacro) to stabilize.  Luke takes a handful of pills morning and night.  He is on antibiotics, fungicides, antiviral and a variety of other pills to keep all systems normal.  It was determined that one of the anti –viral was getting affected the way his body processed the Tarco.  The solution was the changed his oral anti-viral med to an IV.  Good news it seems to be working.   The bad news is he needs to get the antiviral IV which requires Luke has to stay accessed to get the IV at home.  The good news he can self-administer the IV.  The bad news is his mother doesn’t like him to self-administer and being accessed he has greater exposure to infection.        

 

FYI, Luke still has a port.  The port is a tube that was surgically inserted under the skin just below his clavicle.  They inset a needle with a tube on it in the port to draw blood and give him IVs.  Being accessed is a problem as it needs to be kept sterile to prevent infection.  When the Lukester got his bone marrow transplant it wiped out his ability to fight infection.  White cells are coming back but the less exposure he has bad, evil stuff the better off. 

Also of note is the bone marrow transplant wiped out Luke’s vaccine immunology for things for mumps and measles whatever else they vaccinate babies for.  Luke has to be revacinated but they do not want to do that until is system can handle the live virus cells in the vaccine which will be a year from now. 

Hey Luke is back to Rudy’s on Saturday nights.  It tires him out but he loves back to the music.  It’s strange what the BMT affects.  Hair has not returned with any degree of urgency and he has/is losing his figure nails which for a guitar picker is not great.

 

Everyone, thank you for the love and support you have shown for Luke.  It has been a long journey for him.  Our prayer is for no one to have to deal with this disease, but if they for them to have the support of a community like Luke has been blessed with.

 

Kind regards and Luck Feukemia!