Luke returned to Houston from KC June 5.  The doctors at Children’s Mercy Hospital in KC monitored him for four weeks after infusion of the CART cells.  They took labs 2-3 times a week.  

At the four week point they took a bone marrow sample and drew spinal fluid.

KC did a flow cytometery on the bone marrow.  The flow cytometry picked up no leukemia cells and the pathologist saw nothing suspicious in the biopsy.   The bone marrow sample was sent to Children’s Hospital of Philadelphia for additional lab testing required for the clinical trial.  The results from CHOP came back today and confirmed there was no leukemia!!.   Luke’s other labs were good.  Noting bad showed up in his blood or spinal fluid.  Kidney function was good.  Liver results were not perfect but nothing the doctors were concerned with.

Luke was thrilled to finally have his PICC line removed and become tube free.  He’s actually has put on weight and admitted he might need to do a few sit-ups.  He is hopeful of returning to school in the fall.   

What’s left is to wait and see.  For the next three months Luke is scheduled to return to KC for labs as part the monitoring requirements of the clinical trial.  The doctors will be watching for B-cells in his blood/bone marrow as that a sign the CART-cells are no longer active and the cancer has returned.   

Knowing that the CART-cells are multiplying and killing the leukemic B-cells is truly great news.  

 The initial results from the clinical trial are encouraging but the study doctors let you know the first patient was treated only 2.5 years ago and no one knows what to expect long term.  Hopefully the “asshat” is dead, long live the CART-cells!    

Dear Friends and family

Greetings from KC.  Luke has been here a since April 24.  A lot has happened and life continues.  I won’t try to give you a blow by blow but do my best to let you know where Luke is and where things are going   

The first week Luke received four days of chemo to kill off his t-cells so the modified CART-cells would have less competition going after leukemia b-cells.  He was also subject to MRI’s and CTs and a plethora of lab tests with +30 ml of blood being drawn daily.  After finishing the lymphodepleting chemo he had a couple of days off and was infused with the Cart cells May 6^th.  The infusion was uneventful and done in clinic.  He received a massive volume of 17 ml of CART-cells.  Infusion took less than 15 minutes and he went home after two hours of observation. 

From the 6^th until the morning of the 10^th things were uneventful.  Thursday and Friday he went to clinic for labs.  Friday he got two units of blood.  Hemoglobin was low but that was attributed to the chemo he received earlier in the week and not the CART-cells.

Monday morning shit hit the fan.  Luke’s temperature spiked above 102 F.  We took him to clinic and he was admitted.   Over the next few days temperature was all over the place reaching a high of 104 F.  He was given Tylenol for temperature but as that wore off temperature would spike again.  He also had bad headaches and a sore throat accompanied with not so attractive tonsils.  His throat was swabbed multiple times to culture fo.r an infection, but every test came back negative.  In the end Dr. Myers attributed the fur coat on his tonsils as the tonsils having a high concentration of lymph cells where the cancer cells had found a home.  The fur and puss on the tonsils was the cancer cells doing battle with the CART cells.  The headaches may or may not have been the CART-cells attaching the solid tumors that had shown up on his skull.       

By Wednesday Dr. Myers had pretty much decided all the symptoms Luke was showing were related to the CART-cells doing their thing with the result being cytokine release syndrome (CRS).  Apparently a topic during the weekly discussion Dr. Myers had with the brain trust running the study was do we keep patients in the hospital with low grade fevers or send them home.  As Luke’s temperature had spiked to 102.4 Tuesday night and had been below 100 since Dr Myer decided to discharge Luke today (Thursday).  Luke returns to clinic tomorrow for labs but until there is a drastic change he will be treated out patient. 

While in the hospital Luke got his first infusion of IVIG to replace the good b-cells being killed off by the CART-cells.  As long as his CART-cells survive he will need an IVIG infusion monthly from here on out.

Going in it was known that this was a clinical trial and is essentially an experiment.  That was all too evident in the many discussions we had with Dr. Myers as the response to many of our questions was “this is what we think” or “we don’t know”.  They have given so few patients CART-cells there are no standards or definitive trends.  As far as Luke goes only time will tell.  For the next few weeks he’s in clinic 2-3 times week for labs.  Day 28 will be the big day as on day 28 they will do a bone marrow to check for the presence of CART-cells.

I’ve just covered the major crap Luke has gone through the past two weeks.  There’s many more details as far tests, interpretation of results and questions that I won’t bore you with.   I will tell after going through the last two weeks and seeing the courage Luke has shown has been inspiring.  I conclude with Luke we love you and God bless. 

As always Luck Feukemia

Dave             

T-cells next

Luke had his final round of lymphodepleting chemotherapy.  Purpose was to kill off his white blood so there is less competition for the CART cells.  Monday is and off day.  Tuesday he will get baselined for his t-cell infusion.  He's apparently been a topic of discussion at the weekly call the clinical trial team because he had this leukemic tumors and leukemia showing up in his bone tissue.  Along with doing a basic physical he is going to get a CT and MRI.  

Wednesday is t-cell induction. day.  It's all done by infusion through his port.  After infusion it's wait ans see.  They want to see him daily for the first four days and then two to three times a week for a month.  
After infusion they will be watching for cytokine release syndrome when the CART cells go hyper and put the body in shock with a high temperature.  Dr. Myers has said addressing CRS can be handled but depending on the patient it can get hairy

Luke is doing ok.  Chemo doses were moderate so he did not have nausea issues.  Major issues are just being tired and joint pain.  Eating and sleeping well.  

Big day Wednesday.

Luke Feukemia
.    

Day 2 has begun and will be a repeat of day 1, so expect to be here until mid-afternoon. 

Day 1 uneventful.  No nausea, headache or any other complaints.  Ate and drank plenty and finished up around 2. 

When Luke to his uncles's e assembled his lap steel and played a while.  Ate a couple bowls of cereal and fell asleep in front of the TV.  Sometime between 5 and 6 he disappeared to his bedroom and slept until morning.

Spirits are good.  Weather is good and he has his lap steel.  What more can he ask for?

Chemo for the first two days is cytarabine.  He’s had cytarabine before but this time around it’s a much lower dose.  He needs to get IV fluids two hours before and two hours after getting it's a long . 

Dr. August (oncologist) and Dr. Myers (transplant) stopped by.  Apparently Luke is of greast interest with the CART clinical trial team because of him having leukemia cells in the bone as well as the bone marrow.    

Good news from the clinical coordinator.  Novartis has seen a lot of variability in t-cell production but she said Dr. Myers had heard from Novartis they are getting very good production.  Looks like infusion is still a go for the 6^th.

The t-cells are in production

Hey all,

Wanted to bring everyone up to speed on Luke..  Novartis is going to being production of Luke’s T-cells on April 15^th.  It’s a three week process so Luke is scheduled to be back in Kansas City to have lympho-depleting chemotherapy from April 27^th through May 1^st.  The therapy includes 3 days of fludarabine and two days of cyclophosphamide which he will get as an outpatient.  Expectation is for him to get his infusion of T-cells May 6^th.  He will need to then stay in KC for 4 weeks after infusion for observation and treatment as necessary. 

This time between his enrollment and infusion has been a balancing act – they want to give enough chemotherapy to prevent the leukemia from progressing but minimize the potential of organ toxicity, like decreases his liver or kidney function, and depleting his blood counts putting him at risk for developing an infection prior to treatment.  

After infusion one the concerns is cytokine release syndrome (CRS).   When T-cells encounter a foe, they unleash cytokines, proteins that aid in and regulate the immune response. When T-cells get infused and multiply rapidly oncologists have seen a cytokine “storm,” a dangerous release of the proteins. They also will watch for tumor lysis syndrome, which occurs when a massive amount of dying tumor cells release metabolites that build up in the kidneys.

According to the doctors there seems to be an association with disease burden and CRS (more ALL, more CRS), but nothing definitive.  They did do a pre-T-cell infusion marrow biopsy as part of the phase I protocol but they didn’t put that in the Phase 2 trial as they don’t think there is a definitive correlation between an amount of disease  counted on a slide or in a machine and the degree of fever, renal problems, liver or lung problems, etc.  If leukemia blast cells are high prior to T-cell infusion they think you might be able to generalize that there is a higher probability of CRS but at this point they have no way on knowing what level of CRS to expect. 

The doctors do feel the management of CRS is usually pretty good.  The initial patient at Children’s Mercy experienced no fever, no CRS and is over 4 months out with remission.   

Luke’s will be a CD19 CAR T-cell recipient.  Both the leukemia cells and B-cells (another form of white cells in the body needs to fight infection) carry the CD19 protein that the CAR T-cells attach to.  The CAR T-cells don’t discriminate between the leukemia and good B-cells so both are killed off.  If the CAR T-cells do their job and stay around as long as they likely should, Luke will probably need IVIG for the rest of his life to compensate for his lack of B-cells. If Luke’s B-cells begin to show signs of recovery the concern is that that relapse may not be far behind. 

If you watched the PBS special on cancer leukemia and T-cells were front and center.  It was hard to watch the first of the three segments as it was so much of what Luke has been through revisited. 60 Minutes recently did a segment on the success they have had using t-cells on solid tumors and HBO had a special that highlighted the CART trial.     

if you are interested there is a lot of info on the internet on T-cell therapy.  Below are links to a couple of the articles I found good.  One of the articles is heavily technical the other is more of a magazine general knowledge article that provides a good overview of the theory, process and issues. 

That’s it for now.  Luke is feeling pretty good and getting his annual fill of crawfish.  He is scheduled for a few more rounds of chemo but nothing like he has received in the past.

As always your thoughts and prayers are appreciated.

Dave

http://cen.acs.org/articles/92/i40/Immune-System-Fights-Back.html

http://www.nature.com/cti/journal/v3/n5/full/cti20147a.html

Luke had his t-cells drawn Tuesday of last week.  The t-cells are a type of white blood cell and are removed using the same type of pheresis machine used to donate platelets.  The procedure took around 8 hours.  The picture is the t-cell product.  The pinkish stuff in the middle are his t-cells, the lighter colored stuff on top are platelets and the red on the bottom are red blood cells. 

Following the t-cells procedure Luke was started back on chemo.  They tried to give him Erwinia but he had an allergic reaction and they had to shut it down after a few minutes and shoot him up with Benadryl.  Erwinia I’d describe as an indirect chemo.  It breaks down a specific protein leukemia cells are believed to need to grow and multiply.  Without the protein the leukemia cells growth is inhibited.  After recovering from the reaction to the Erwinia, Luke left the hospital around 9 PM. 

Luke was back in clinic Wednesday morning.  Luke met with Dr. August, the chemo doctor on the trial team at CMH, and it was decided to let him get back to Houston and make a decision in Houston on trying Erwinia again.  Luke rested the rest of Wednesday and we headed back to Houston on Thursday. 

Friday he was at the MDA clinic and it was decided to try Erwinia again.  The results were the same as KC.  He had an allergic reaction.  The Erwinia was stopped and he was shot up with Benadryl.  Luke was getting Erwinia because he was also allergic to another Erwinia type drug.  He had gotten Erwinia dozens of time before without a problem, but it is not uncommon for someone to develop hypersensitivity after multiple doses.  He’s back in MDA clinic Monday for Vincristine and its wait and see what they want to do since he can’t tolerate Erwinia.  

The overall plan from here is for Luke to get maintenance chemo until his t-cells are ready to be reintroduced into his system.  Novartis is the t-cell technology provider and a date needs to be scheduled with them to process the t-cells.  Dr. Myers next time slot for Novartis was mid-April.  Processing takes three weeks so once the cells go to Novartis Luke will likely be schedule a return to KC and receive the t-cells the first week of May.  It’s expected he will be in KC for a month for t-cell reintroduction.

Just an overview of the clinical trial.  They will extract Luke’s t-cells and genetically modify them to introduce a receptor on the surface of the t-cell,  That receptor will attach to a C19 protein that is on the surface of the leukemia cells.  Attaching to the leukemia cell it is hoped that the t-cell kills the leukemia cell. 

On the bright side, this past Saturday, the sisters had a surprise for Luke.  All of his sisters were in town and before going to KC we had gotten tickets to see Brad Paisley at the rodeo.  Paisley is a Belmont graduate where Luke is in school.  After getting tickets Luke’s sister’s Beth and Kendall took it upon themselves arrange for Luke to meet Paisley before the concert.  They do good work!  There were about fifty people in the meet and greet line and the six of us were directed to the end of the line.  After everyone else left the greeting room Luke was invited in to meet Paisley.  Luke and Paisley talked for 5-10 minutes covering music and Belmont.  After Paisley’s entourage took a few pictures Paisley left to perform and we were told to follow through the back passages of NRG stadium.  Paisley went out to the stage in the middle of stadium in a pickup truck and we were led behind the pick up to the stage where we watched the concert 20 feet from the stage in what they called guitar world – the area where they kept all the guitars for the performance.  It was a great Saturday evening which was closed out with crawfish.  I don’t know who Beth and Kendall got hold of to pull it off but WOW did they pull it off.  

Luke Update

You hear life is a roller coaster; well there is no other way to describe the week Luke has had.  This is life as we know it on Friday the 13^th.

Last Sunday we drove to KC Sunday arriving at 8:30.  Luke was not looking very well and had a temperature of 103.4F.  The leukemia rule is over 101F go to the ER.    

We reached out to our contact at Children’s Mercy Hospital (CMH) that were running the clinical trial Luke came up to see if he would be eligible.  We were told to take Luke to the KU Med Center as the CMH ER would not know what to do with a 25 year old child.  Luke was at KU Med at 9:30.  He was admitted and had a bed 5 am Monday.    

He was tested and cultured to death.  His blood counts were low but not crazy low.  Labs found two viruses RSV and para influenza and concluded symptoms were virus and not leukemia related and began antibiotics.

The folks at KU were made aware of why Luke was in KC and when his temperature came to range the discharged him and we went over the CMH. 

We met with the CMH staff responsible for the study beginning Tuesday.  They had him scheduled for a battery of tests required for the trial protocol. .  Unfortunately because of the protocol requirements CMH could not use the KU testing so they had to do their own CT’s MRI and LP

CMH also did a bone marrow.  Good news was no blast cells showed up in the bone morrow the bad news was the trial required a candidate to have an active disease and show at least 5% blast cells so based on the bone marrow test run Luke would not qualify for the trial.  .  . 

That was not entirely unexpected as previously Luke had been very responsive to induction chemo.  It was surprising in that he only had 2 weeks of what is normally a 4 week induction protocol. 

This week Luke had multiple LPs, CTs, MRI.  The leukemic tumors thought to be causing is liver and headaches have shrunk.  Yesterday his hemoglobin was low and he got two units of blood.    

If Luke’s bone marrow shows active leukemia he will qualify for the protocol.  The consensus of the doctors is it is not a question of if the leukemia comes back but when.  In anticipation of the leukemia coming back Luke is still going to have his t-cells drawn.  They were going to try to do that Friday but he has been plagued with a headache since before he got here and has not been able to keep anything down since last night so t-cell extraction is rescheduled for Tuesday next week. 

Well things changed.  Luke received and email this morning telling him that when they decalcified and tested his bone marrow they found 50% blast cells.    Blast cells are usually identified using a flow-psy test and slide smears on the spinal fluid and neither showed leukemia cells.  The final test they did was to decalcify the sample and when they did that they saw what he called globules of blasts as opposed to single cells.  Doctor Myers only comment was Luke knew something was wrong and he was rights.  Seeing leukemia agglomerate like they saw in Luke’s bone marrow was rare.    

Luke will have is t-cells drawn nest Tuesday and head back to Houston.  He will likely continue to get chemo until his t-cells are modified and ready to be reintroduced into his system.    That should be 3-4 weeks after they collect his t-cells. 

That is if for now.  T-cells taken next week and modified cells given bask in early April.        

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

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