Our son Luke was diagnosed with acute lymphoblastic leukemia (ALL) in June 2015. The leukemia did not respond to chemotherapy,
so his doctors turned to research to look for a way
forward. The researchers found a chromosomal
translocation in the leukemia cells that suggested
the drug ruxolitinib (Jakafi) might help. It did.
After 9 months of chemotherapy and ruxolitinib,
there was no sign of leukemia cells with the
chromosomal translocation. But there were
some other leukemia cells there. After CAR T-cell
therapy, these cells were also undetectable, but the
doctors are worried that Luke will relapse, and so
he is having a bone marrow transplant at the end
of August 2016. We hope that this will put Luke’s
cancer behind him, and he will be back playing
baseball next season.
Luke’s diagnosis with ALL came just days
after we took him to the pediatrician for what
we thought was sports-induced asthma. He had
just finished sixth grade and was playing baseball
every day. It was hot out, and when he seemed to
be having breathing issues while playing and was
sleeping a lot when he came home, we weren’t too
worried. But after about a week, we took him to
the pediatrician to find out what was going on.
After weighing Luke and discovering he had lost
about 10 pounds, the pediatrician began asking
lots of questions and ordered blood work and a
chest X-ray. She called the next afternoon and said,
“I hate to tell you this, but Luke has leukemia, you
need to go to Children’s Hospital of Philadelphia
The doctors were waiting for us and immediately
started leukopheresis. There were so many white
cells in Luke’s blood that they had to take some
out. They could not believe that he had spent the
day at the pool and playing baseball. They told
us that with a white blood cell count as high as
his, he should have been unable to get out of bed.
Luke spent the next 5 weeks in the hospital
receiving intensive chemotherapy. But the
leukemia didn’t fully respond to treatment. When
the doctors suggested having his leukemia cells
analyzed by researchers, we were happy to agree
because we wanted solutions to the problem and
a cure for Luke.
The research analysis identified a chromosomal
translocation, GOLGA5-JAK2, which led the
doctors to add a drug called ruxolitinib to Luke’s
chemotherapy. After about 9 months, leukemia
cells with the GOLGA5-JAK2 translocation were
undetectable. But there were other leukemia cells
Fortunately, early on in Luke’s treatment, the
doctors had taken his T cells because they were
hoping that he would eventually be a candidate
for a CAR T-cell therapy clinical trial. The
ruxolitinib/chemotherapy combination did the
job. This treatment knocked down the number
of leukemia cells sufficiently so that Luke could
enroll in the trial.
Luke received the CAR T-cell therapy in May
2016. The procedure was very simple, and he had
no side effects.
A few weeks later, we learned that there were
no leukemia cells detectable at all.
The doctors are worried that because Luke’s
leukemia was very aggressive and chemoresistant,
the CAR T-cell therapy will not keep him in
remission long term, so he is scheduled to have
a bone marrow transplant at the end of August.
The whole procedure will be tough for Luke
because he will have to be in the hospital for up
to 8 weeks, and after that, he won’t be able to go
back to school for another 6 or 9 months. Luke
loves being in school with his friends, as he is very
sociable. Throughout his treatment, we have tried
to keep things as normal as possible for Luke and
his brothers. He has been to school and has played
baseball as much as he can. These activities seem
to have really helped him deal with everything
he has been through.
We are very fortunate to have had incredible
support from our family and the community
throughout this experience. Our lives were changed
forever, but we hope to give back by telling how
research changed our lives by giving us options for
Luke. With more funding, research can do even
more; maybe it can lead to a cure for everybody.
58 AACR CANCER PROGRESS REPORT 2016
LUKE THEODOSIADES // AGE 13 // SWARTHMORE, PENNSYLVANIA
IS THE MOST