At six years old, when “growing pains” in his legs started to become painful, TJ was diagnosed with acute lymphoblastic leukemia. Following multiple relapses, TJ’s doctors at Children’s of Alabama recommended CAR T-cell therapy as a less invasive alternative to bone marrow transplant. Today, TJ is a few months post-treatment and remains a healthy and happy twelve-year-old.
In her own words, TJ’s mother Marianne shares the story of her son’s diagnosis, relapses, and the journey to CAR T-cell therapy.
In November 2015, at six years old, TJ was diagnosed with Acute Lymphoblastic Leukemia.
The first symptoms has been cramps in his legs that were very painful, followed with low grade fevers. When we took him to the doctor, his labs initially returned normal and the leg cramps were dismissed as “growing pains”.
It took over two months to get an official diagnosis.
Following confirmation of his leukemia, TJ was supposed to do the three-year Very High Risk protocol, but relapsed in the maintenance stage. He did OK with treatment, but just seemed to have lots of minor complications, including seizures after High Dose MTX.
TJ relapsed first in March 2018 at age 9, and again in March 2022 at age 12.
Headaches were the initial indicator for both relapses, as well as some random nausea and vomiting episodes. All labs were initially normal during both relapses as well. With the first relapse he ended up having hydrocephalus and had to have a programmable shunt placed in his brain to drain the excess fluid. He then did two years of chemotherapy and Blina, and 10 days of cranial radiation.
With the second relapse he mainly had the headaches, and we honestly didn’t believe it was a relapse because he had been off treatment for 2 years. The neurosurgeon went in to do a shunt revision and found 81% blast in his central nervous system (CNS).
TJ’s oncology team at Childrens of Alabama suggested CAR T-cell therapy as an alternative treatment option, and recommended saving bone marrow as a last resort. We opted to do CAR T-ell therapy versus BMT due to it being less invasive and harsh on him.
We were left with no other options.
We met with the transplant team at Childrens of Alabama, they enrolled us, and then we prepared for the cell collection. The process took about 2 weeks to begin.
Our medical team was amazing at handling every fine detail and keeping us involved the entire time.
TJ received his cells on May 31, 2022 and has done amazing. He did experience cytokine release syndrome (CRS) and immune effector cell-associated neurotoxicity syndrome (ICANS) during the process, but they resolved quickly with only one dose of tocilizumab. We spent about 3 days in the ICU, but thankfully we caught it early and treated quickly.
Today, TJ remains in remission post CAR-T. He is a shy kid, but once you get to know him he is funny and loving. He loves video games and fireworks, building legos, and is very creative.
The CAR T-cell therapy process is so much easier on the child. We are grateful for the outcome we have had since receiving the treatment.
We receive messages from families around the world with experiences similar to TJ’s family. We do whatever we can to be a resource for these families to help them get enrolled in a clinical trial or find an eligible CAR T-cell therapy treatment center.
To search for available CAR T immunotherapy clinical trials, visit our Pediatric Cancer Clinical Trial Finder. To help us in our mission to give children around the world the opportunity to Activate the Cure to their cancer, Get Involved or Donate now.