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.