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

Transplant Day +31

Luke is hanging in there.  The results from the liver biopsy they did Monday at MDA did not show any issues other than VOD (does everyone know what VOD is?) His liver and kidney lab results are stable or improved again today. Luke had a run up in his CMV indicator.  CMV is a virus everyone has but their immune system keeps it a bay.  Luke received an antibiotic for the CMV virus and results today showed reduced CMV levels.  Weight has gone down (given Luke’s athletic build it is hard adjust one’s  mind set that weight loss is good for Luke).  Weight loss is hopefully due to his body reabsorbing the fluid in is abdomen and processing it though the kidneys but some of the weight loss is probably attributed to their pulling fluids off using the catheter.  Temperature is bouncing around but he has not gone above 101 F.  Luke’s bilirubin was lower today but he received a transfusion of red cells yesterday which likely contributed to the decline – but hey it’s good news.   

PT was able to get Luke out of bed yesterday.  He walked about 100 ft.  This was the first time he had walked any distance in over a week.  Today after he came out of the john mom suggested they walk.   Luke was obviously delirious as he actually agreed to take a stroll.  Luke and his mom proceeded to walk 200 feet.  Exhausted he climbed back in bed and celebrated by eating some peanut butter and pudding.  This was the first solid food he has had in over a week.  Needless to say mom was overjoyed with these accomplishments and has been awarded this week’s gold medal for patient care (had there been wine available she would have toasted her own accomplishment).

Luke’s conscience state is all over the place.  He is still dealing with a lot of pain.  He will sleep for extended periods due to the pain meds but it is not restful sleep.  He slept most of yesterday and last night he was up and down a lot. 

Patrick came by Thursday and and Cale came by Friday.  Both received a somewhat rousing “hey bro” from Luke (Cale even received a fist bump) but that was the extent of Luke’s social interaction as after greeting both Luke closed his eyes and went back to never never land.

As the doc said today, he thinks Luke has turned a small corner.  We are hoping over the next few days it becomes a big corner!

Transplant Day +29

Luke was transferred to Methodist Hospital here in Houston Tuesday evening to begin treatment for veno occlusive disease (VOD) - yet another acronym for your medical vocabulary to impress friends and family   VOD is a condition in which the small veins in the liver are obstructed. It is a complication of high-dose chemotherapy given before a bone marrow transplant (BMT).  There is not definitive test for VOD.  Its presence is primarily symptomatic, marked by weight gain due to fluid retention, increased liver size, and raised levels of bilirubin in the blood.  Luke’s biopsy did show signs of occlusion.   

Methodist participated in an FDA clinical trial of a drug called Defibrotide.   Defibrotide was found to be effective in treating VOD but use of the drug is still in FDA in never-never land.  Because Methodist participated in the clinical trial they have access to the drug and FDA allows the compassionate use the drug.  Defibrotide works by dissolving clots, the problem is it can work too good and cause internal bleeding.  Defibrotide has been in use in Europe for a number of years, in fact we were told they give it to BMT patients prior to transplant to address the VOD issue.  

Luke was started on Defibrotide immediately upon arrival at Methodist.  The protocol is for the drug to be given for a minimum of 21 days so Luke may not see the Houston sky until February 1. 

Luke has been in a lot a pain due to the accumulation of fluid in his abdomen and swelling of the liver.  He is still being medicated heavily and at times is disoriented.  For clotting they are trying to keep platelets up.  They are also limiting his fluid intake.   They have drained Luke’s abdomen to relieve the pressure he is having.  Luke has not eaten anything since the last week and by draining his abdomen he is losing all the protein in the fluid which is not good.  Needless to say it is a balancing act.

Hated to leave the familiar surroundings of MDA but the docs at MDA were on top of the VOD issue and thought getting Luke on Defibrotide needed to be done.   

The guy needs a break!

Luck Feukemia!

Transplant Day +26

The last few days have been rough for Luke. Medically there is a lot going on. Doctors believe his liver and kidney have at least stabilized as bilirubin and creatinine have stopped going up or have come down a little and his weight did not increase overnight which is a sign he is not accumulating liquids. Still has fluids in his abdomen that are making him uncomfortable. They did remove additional fluid last night, but doctor only wants to do that if absolutely needed due to the risk of infection using the catheter. For the past 36 hours temperature has stayed below 100.

As a whole the situation is a balancing act.  He is getting platelets and blood (hemoglobin @ 7.5 vs +14 normal; platelets at 19 vs +140 normal). Other than blood and platelets his water intake is limited to 1 liter a day to keep fluid buildup down. He is getting medications to get is veins to absorb fluids and to increase a liver enzyme believed to help dissolve the clots in the small vessels.

Luke is scheduled for the liver biopsy tomorrow. MDA is getting the approvals in place to have him transferred to Methodist if the decision is for him to get the liver med that FDA approved for clinical trial. The MDA transplant patient review committee is probably going to review Luke’s case tomorrow morning to decide on moving to Methodist. During rounds today the doctor did not think they would want to ship him over to Methodist under the care of a new transplant group provided liver and kidney function don’t get any worse.

Skin is still rashy. They did a biopsy of the skin on his thigh. Biopsy came back as GTHD which is considered positive as it is a sign his white cells are attacking foreign cells – just do not what it to get worse. Luke is still having a lot of pain and just can’t get comfortable. He did sit up in a chair today. Yesterday he was heavily sedated to the point of being a bit incoherent at times – yes Luke Beth did have Japanese Sushi. They cut back on the pain meds and we’re keeping the shades up and light on during the day so he knows it’s daytime.

Update Transplant Day 25

Friday was a rough day. Luke was heavily sedated due to pain in the abdomen and back from fluid build up. Around 6 pm they withdrew 2 liters of fluid from his abdomen. The catheter used to withdraw fluids was left in the event fluids continue to accumulate and need to be withdrawn. Hopefully getting the fluid out will relieve some of the pain. MDA has contacted insurance and Methodist Hospital on doing the treatment to dissolve the clots in his liver. Insurance is going to require a liver biopsy. The MDA protocol does not allow a liver biopsy unless platelets are at least 20 (normal is +240). Luke's platelets started the day at 8 and after two bags of platelets they were only able to get him up to 18. With the weekend a biopsy is now scheduled for Monday. One of his liver enzymes that affect clotting is out of range so he is going to get meds to raise the enzyme level. Will see if that works. The kid looks pretty beat up. Good news is temperature has not spiked, white count look good and with getting his Tarco down the headaches have lessened. Platelets and red cells recovery is slower than white cells. Until his marrow starts to produce platelets and red cells transfusions will be daily. With all that it's amazing the number of issues he has requiring treatment; skin rash, dry eyes, fluid retention, liver, stomach and low blood counts.

Transplant Day + 24

No significant change overnight - the things they are tracking appear have have either stabilized or gone down. The thinking is the accumulated effect of chemo and medicines Luke is receiving is impacting his liver and causing the small vessels in the liver to occlude and that is impairing blood flow. He is retaining fluids and his abdomen became is very distended. Luke has a lot of abdominal pain and getting comfortable is difficult. Over night they took him off or reduced the dosage of meds that may affect the liver. They also reduced Luke's fluid intake and he has started to pee. Overnight he did not have weight gain which is positive. His liver and kidney functions were trending in the wrong direction yesterday but overnight it looks like they stabilized or dropped a little. He is getting an ultrasound to see how much fluid is on his abdomen. Depending on what the ultrasound shows they may pull fluid from his abdomen. Transplant brought in a consult on the liver. There was some discussion around giving Luke a medicine to dissolve clots in his liver. Before they do that he will probably get a liver biopsy to confirm whether the small vessels are clotting. The treatment to dissolve clots was just recently approved by FDA. If the decision is for him to receive the treatment he will have it done ate Methodist as MDA is currently not approved to administer. Luke got more platelets this morning. They are holding up on giving bed blood to limit his fluid intake. Temperature has not a problem overnight but they continue to run blood cultures. Experienceing some nausea.

Transplant Dat +22

There was a bit of reversal of fortune today.  Luke stomach had become distended.  After testing they think he may be having an issue with his liver.  Testing is showing some small clots in his liver.  They are changing some medications that do not have as much of an impact on liver function.   Doctor's initial prognosis is it's comes with the BMT and all the meds and  the condition is reversible and entirely treatable.   

He spikes a temperature once in a while but it responds to Tylenol.  Eating a little more.  Getting platelets is a daily occurrence. 

Will keep you posted.

Dave