Meet Austin Schuetz (10 years cancer-free)
Halloween just so happens to be Kimberly Schuetz’s birthday. So, on the night of Halloween in 2013, she received one last birthday gift.
She was following along the trick-or-treating adventures of her 5-year-old son, Austin Schuetz, who was going door to door in a Philadelphia suburb asking for candy. This activity was a reprieve for Kimberly from the waiting game – waiting to learn if Austin’s CAR T cells were working as they should in order to control his B-cell acute lymphoblastic leukemia.
Just as Austin had walked to the next house and rang the doorbell, Kimberly received a phone call. On the other line was Dr. Shannon Maude, of Children’s Hospital of Philadelphia, which was hosting the CAR T-cell therapy clinical trial Austin had joined and was the direct result of research funding from Alliance for Cancer Gene Therapy (ACGT).
“It worked,” Dr. Maude told Kimberly. “He has no cancer anywhere.”
Austin’s engineered T cells went further than just controlling his leukemia; they eliminated the cancer. After two years of trying to find a solution on how to beat this disease, they found one in cell and gene therapy.
Austin’s diagnosis of acute lymphoblastic leukemia
On May 14, 2011, Kimberly and her husband received the news no parent wants to hear: “Your son has cancer.” Kimberly, an oncology nurse herself, noticed a few weeks prior that Austin had swollen lymph nodes. They went to the University of Madison Wisconsin for blood tests. Austin was supposed to be getting ready for his upcoming 3rd birthday party back at his home in Fall River, Wisconsin.
Instead, his life was about to change.
The standard treatment plan for B-cell acute lymphoblastic leukemia is a two-year chemotherapy regimen, which Austin started the day he was diagnosed. He also received radiation therapy due to the cancer spreading to the brain. However, this treatment approach did not control Austin’s leukemia long term, and he relapsed within two years.
All the while, Austin kept his spirits high and continued to do whatever was asked of him throughout the journey.
“He was amazing,” Kimberly said. “He didn’t know that this was unique to him. He didn’t know that other 3 year olds didn’t have to do this. He thought this was a part of life.”
Next was a bone marrow transplant (also called a stem cell transplant), which Austin received in February of 2013. Two months later, a surveillance biopsy showed residual disease, meaning he would eventually relapse.
Austin’s doctor, Neha Patel, drove 45 minutes from Madison to Fall River to talk with and console the family. Dr. Patel knew, if there was no other option, then Austin would likely die.
Enrolling in a landmark CAR T-cell therapy
Soon after the second relapse, Kimberly learned of a clinical trial at the Children’s Hospital of Pennsylvania (CHoP) involving a new type of cancer treatment called CAR T-cell therapy. This therapy involves taking a patient’s own T cells and engineering them genetically to more effectively look for and find cancer. The idea is to harness a patient’s own immune system to fight cancer without using toxins such as chemotherapy.
Even though Kimberly is an oncology nurse, she didn’t know much about CAR T-cell therapy, but it was a possible lifeline for her son.
“It sounds like crazy science fiction,” Kimberly said, “but all I had was hope.”
On October 1, 2013, Austin became the 21st child in this groundbreaking clinical trial to receive CAR T-cell therapy for cancer. Kimberly remembers the process was “pretty insignificant” but noted Austin experienced “horrific headaches” a few days after the CAR T-cell infusion. That meant Austin’s supercells were attacking the leukemia that had metastasized to his brain.
The therapy was working.
They remained in Philadelphia for six weeks in case there were adverse events and to do a bone marrow biopsy for any signs of cancer. A few days after the biopsy, on Halloween night, Kimberly got the phone call from Dr. Maude, a call that she’ll remember forever.
Austin was cancer-free.
Six months after Austin received his CAR T cells, a bone marrow biopsy revealed the potential for relapse. So, in April 2014, Austin received his remaining CAR T cells, which had been frozen and saved as an insurance policy. The second infusion of cells swatted back any possibility of a relapse, and – 10 years later – there has never again been any sign of Austin’s leukemia returning.
“I don’t remember the treatment much,” Austin said, “but I know what I did was going to help other people with cancer.
“And I’m glad that I’m still here.”
A message to doctors and donors: ‘Thank you for saving my life’
The physician who ran the clinical trial at CHoP was Dr. Stephen Grupp, who was also the doctor for Emily Whitehead when she received CAR T-cell therapy. Emily, also part of the CHoP clinical trial, was the first child ever to receive CAR T-cell therapy. She and her family have started the Emily Whitehead Foundation to fund CAR T-cell therapy and other emerging immunotherapies for childhood cancers.
Each year, the Emily Whitehead Foundation holds the Believe Ball, which brings together patients, survivors, families, physicians, researchers and others who are passionate about finding a cure for childhood cancers.
At the Believe Ball in 2017, four years after Austin received his CAR T cells, he met Dr. Grupp along with Dr. Carl June, whose ACGT-funded research led to the clinical trial and the first FDA approval of a cancer cell and gene therapy.
“Austin shook their hands and said, ‘Thank you for saving my life,’” Kimberly remembers, noting that it was ACGT’s donors who helped fund Dr. June’s research, led to the clinical trial that Austin joined, and led to that memorable birthday present for Kimberly.
“This is what your dollars are doing,” Kimberly added. “You made a miracle happen, and you allowed someone to live their life and allowed me to watch my kid grow up.
“When these brilliant researchers get the funding they need to do this work and develop new cancer therapies, miracles can happen.”
