Prayers for luke

It hurts to have to tell you that Luke's cancer has relapsed.  He was experiencing some problems in Nashville recently and the medical team at Vanderbilt consulted with the MDA team and they concluded it was best for him to return to Houston.  Bone marrow testing showed the presence of blast cells and he was admitted to MDA yesterday to begin treatment.  Unfortunately with each relapse there are more complications.  Before they can come up with a longer term treatment plan efforts are focused on addressing a number of critical issues found as the result of MRIs CTs and ultra-sounds

Please keep Luke in your thought and prayers.

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!      

 

 

Transplant + 76 Days

It will be two weeks tomorrow that Luke was discharged and 76 days since transplant.  The word that best describes the past two weeks is “fatigue”.  Not much stamina but with each day he is getting stronger. 

Each of the past 2 weeks he has taken 3 morning excursions to MDA for labs, transfusions and IV fluids.  His cratine was running high probably due to one of his medications, so he got a couple liters of IV fluids Monday.  His white counts were low so he received nupogin.  After getting the nupogin his white counts came back to the detriment of platelets and hemoglobin.  Needless to say it’s a balancing act.

Luke is getting the proverbial boat load of meds.  There are 15-20 pills morning and night and additional in between.  Headaches are a reoccurring problem.  A common side effect of The Tacrolimus he takes for GVHD is a headache.  A couple of nights the head as bad enough require a visit to the porcelain throne.

Overall Luke is doing very well.  Dr. Worth, his transplant doctor is happy on all fronts.  Favorable news this week was Luke has 100% transplant cells - Kendall’s cells have has seized control of his body (the effect on his mind has yet to be determined).    The next big step in Luke’s treatment is the t-cell clinical trial.  They took t-cells from Kendall and genetically modified them to attack a protein on cancer cells.  T-cell delivery will be a week from next Monday.    

The steel pedal and guitar are starting to see more action.  His appetite is coming back ok.  The need to sleep often overpowers the need to eat though.  His diet is still restricted, no fresh fruits or vegetables        

Visitors are welcome.  There was a welcoming committee of the Curtins, Parmers, Youngs, Hopkins, Eric and Buffy greeting Luke in the driveway upon his discharge from MDA.  Julie and Kevin, Francis and the cousins have stopped by.  Luke still needs to stay away from crowds and when he travels to MDA or is outside the house he wears a mask and gloves. 

Currently the only one complaining at all about having Luke home is Traveler.  Seems in Luke's absence he assumed care, custody and control of the couch and now has competition from Luke.   

 

FYI a reoccurring muttering heard from Luke’s lips has been “when does mudbug season start”?

I'M HOME!

Transplant Day +52; Inpatient Day +62

Luke was discharged from Methodist late Wednesday and made his way to MDA.  For the past 48 hours MDA has been running their panels to benchmark Luke's condition .   Tomorrow morning they are going to check Luke's CBC, chemistry and enzymes and if all is good he will be discharged tomorrow morning.  All 130 lbs. of him will be taking up residence next to Traveler on the house couch this time tomorrow.   Two months to the day he is returning home. 

MDA did not want to discharge Luke until Monday, maybe Sunday but the "I want to go home to see my dog and watch the Super Bowl" face worked to get a Saturday discharge. 

MDA is taking him off the last of his IV meds today.  After they draw labs tomorrow they will pull the drug feeding tube in his chest.  He coming home with a box full of meds and for the near term he will be making the trip down to MDA for labs on a daily basis. 

He is eating OK, just can't eat a lot a one time.  He did make an inquiry about crawfish and was pleased to hear that home cooked crawfish would be allowed on the menu in a few weeks.   

Getting Luke to the point of being discharged considering where he was three weeks ago is amazing. Just the progress he has made since Sunday last week is tremendous.  He has a way to go to get his strength back and to know if he has cleared the GTHD hurdles but getting him home is a big step.  The docs at MDA and Methodist are great.  Doctor's are happy, Luke is happy, we are happy.  Can't say enough about every ones help and prayers. 

Luck Feukemia

Transplant day 45; in patient day 55

Luke continues to make progress.  His abdomen drain was removed Tuesday to his great relief.  His last dose of Defibrotide will be 2 am Wednesday morning January 29, 2014 (everyone is counting the doses).  When the Defibrotide finishes up he will report back to MDA for how long he doesn’t know. 

He must have received 20 units of platelets since he was admitted to Methodist.  To get the Defibrotide his platelet count needs to be above 30K.  He received a bag of single donor platelets yesterday and today got a pass on platelets with a count of 38K.  Platelets need to get up to over 140K to be considered normal.  Hopefully when he is off the Tacro platelets will start to increase on their own.

Right now Luke is weighing in at a massive 130 lbs.  He’s starting to eat, just not much at one time.  Other than fresh fruit and raw vegetables he has no dietary restrictions.   In the picture to the right Luke is enjoying an pick me up from a Margie's special imported lemonade. 

He is walking regularly and sitting up in a chair.  Actually strummed the guitar today for the first time since leaving MDA.  Also began assembly of Yoda’s Lego commissioned interstellar transport vehicle.
 

Dear sweet Adri was here over the weekend.  Her visit was undoubtedly the major factor in for Luke's recovery this week.  Alas Adri could not make to Houston this weekend as she is on the way to LA to work at the Grammy's.  I'd like to know how you get a job like that.   Can you pick out Adri in the photo to the left?

Needless to say Luke (and the rest of the fam and Traveler) are anxious to get out of Methodist.  

  

Day +38

Sorry for no blog for a while!!

After a long couple weeks things are starting to look so much better for Luke!  Yesterday he had a repeat ultrasound to see how his liver has been doing and the docs were very excited to announce the flow through his liver is back to normal and headed in the right direction.  His spleen was still a bit full of fluid but this should get better as the liver continues to heal.  The fluid in his belly is getting better and the docs are starting to talk about taking out his abdominal drain.

The treatment for the liver is a total of 3 weeks at methodist on this special drug- hard to believe Luke has already been here 1.5 weeks so only 1.5 more to go!  Baring no further bumps in the road Luke can likely go home straight from here or if Methodist does not feel he is ready he could go back to MD Anderson.  Luke is now only on Albumin/Lasix during the day which makes for a much more restful night as far as bathroom trips. His liver enzymes are now completely normal and his bilirubin is almost there too!

Luke is a bit better every day as far as energy, motivation and appetite (although still not much appetite).  We try and take advantage of every opportunity to give him spoonfuls of peanut butter or mac and cheese- the idea of good nutrition has gone out the window and we are in calorie mode!!

Adri is coming in tonight and we are hoping this gives Luke a bit of motivation!  Beth and I are also in town for the weekend although our faces do not get the same excited response as Adri's face does.

Super exciting blessings around these parts!  God is good!  Please continue to keep Luke in your thoughts and prayers and if you get a chance read Psalm 3...from the very beginning Luke has told me this was his "transplant jam" and seems very fitting!!

Blessings
Kendall