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