What do you do when you’ve been told your child has maybe 3 to 6 months to live? As the saying goes, “You get busy living or you get busy dying.” That’s the situation Kim and Jeff Schuetz were put in when their son Austin relapsed not once, but twice after treatment for Acute Lymphoblastic Leukemia (ALL), the most common type of childhood cancer.
When Austin was diagnosed with high-risk ALL just before his third birthday, their world stopped. Kim remembers, “feeling like I was floating up above myself, watching somebody else’s life. Your brain goes numb and it’s hard for you to think.” Just like that, their life shifted from planning Austin’s third birthday party to joining the “childhood cancer club.” And the nightmare began.
Austin’s treatment was scheduled to last 3 ½ years and would include intense chemotherapy, bone marrow biopsies and six days of daily cranial radiation. Before treatment ended, he relapsed and the doctors said the only option was a bone marrow transplant. Kim was terrified. As an adult oncology nurse, she knew what lay ahead. As she put it, “We put patients on the brink of death and pray that we can bring them back.” Fortunately, the transplant worked and Austin was declared cancer free.
Sometimes the Road to Recovery Looks More Like the End of the Road
Two months later, after a scheduled bone marrow biopsy, Kim and Austin were at home playing. The door opened and in walked Jeff with tears streaming down his cheeks – Austin’s cancer had come back. Austin still remembers that moment… it’s imprinted on his memory. It would be the first and last time he ever saw his dad cry.
As an oncology nurse, Kim knew that after a relapse options become scarce. Fortunately, Dr. Christian Capitini, a member of the St. Baldrick’s — Stand Up To Cancer Pediatric Cancer Dream Team and Austin’s transplant doctor, had an idea. It depended on a high-risk, high-reward St. Baldrick’s supported Phase 1 clinical trial that used a drug that is now called Kymriah. In life, sometimes a gamble is your last hope. As it turned out, Austin’s last chance at life was the first human trial for Kymriah.
The Clinical Trial That Might Provide a New Lease on Life
Kymriah is called a ‘living drug,” because scientists extract immune system T-Cells from the patient, genetically modify the cell DNA to hone their ability to seek out and kill cancer cells and then infuse the cells back into the patient. These modified cells are called CAR T-cells or chimeric antigen receptor T-cells and are a type of immunotherapy.
Austin was the 21st patient enrolled in the Phase 1 clinical trial at the Children’s Hospital of Philadelphia (CHOP) and the procedure was administered by Dr. Stephan Grupp, a St. Baldrick’s – Stand Up To Cancer Pediatric Cancer Dream Team member. Dr. Capitini explained, “The whole basis of the treatment is the belief that we have cells in our bodies that can fight cancer, but when we get cancer those cells don’t operate properly.” He went on to say, “We’re in the dawn of a new era. The idea that the immune system can fight and kill cancer is very real.”
Shortly after the procedure, Austin was out with his parents and grandmother trick-or-treating on Halloween night, which ironically is Kim’s birthday – when what a treat they got! Kim got a call with Austin’s bone marrow biopsy and lumbar puncture test results – the tests were clean, there was no more cancer. Kim fondly recalls crying and shouting, “Oh my God, oh my God! It worked. It worked. He has no more cancer!” Kim’s mom then started crying too.
As for Austin… well, he just wanted to keep on trick-or-treating. As it turns out, they were on a street that was giving out the full-size candy bars.
Kim takes solace in the fact that Austin was unfazed by it all. As Kim explained, “That’s the way it should be. I’ll carry all the worry and the burden and you don’t have to worry about it.” The news that Austin was cancer free was the best birthday present Kim has ever received – and it’s a gift that keeps on giving.
Kymriah… For Kids with High-Risk Leukemia, Those Seven Letters Spell Hope
“For the Phase 1 trial Austin participated in, 90% of kids went into complete remission in the first month after receiving the cells. That’s a rate that we hadn’t seen before for other therapies – for something to work that quickly and that potently,” Dr. Capitini said. Six months after kids received the cells, the overall survival rate hovered around 78%. This was double and even triple the survival rate of previous therapies, including other immunotherapies.
Kymriah is the embodiment of hope for kids like Austin. Hope starts with research and this research would not have been possible without the St. Baldrick’s – Stand Up To Cancer Pediatric Dream Team. Since Austin’s life-saving treatment with Kymriah, many other patients with relapsed acute lymphoblastic leukemia have reaped the benefits of the Dream Team’s research. According to Dream Team member Dr. Capitini, “Kymriah is going to get better and eventually there will be a lot more cancer-free kids like Austin, thanks to childhood cancer research.”
Austin’s Now Free to Chase His Dreams
Twice a month Austin receives injections of an antibody that replaces his immune system and helps him fight infection. “Austin’s lack of detectable B cells is proof that the T cell therapy is still working its magic,” said Dr. Capitini. He explained that, “Drugs can’t form memory but living cells, specifically T cells, can. And much like how vaccines work, the cells form memory and then any time a new cancer cell pops up, it’s there to quickly get rid of it.”
On June 16th, Austin turned 12 and is now enjoying the freedom that his cancer took away during his childhood. In October Austin will be 7 years cancer free! He’s now living the dream, swimming in his backyard pool, playing with his two new kitties and going out fishing on the boat as much as possible. He’s even a published author. The kids in his school each described what their dream was and the combined stories were published in a book called My Dream. Austin’s dream was that every child in the world would be cancer free. He thanked the doctors and nurses for saving his life and said that without them and his parents and grandparents he wouldn’t be here today.
As for Kim, she believes miracles do happen but says, “Without St. Baldrick’s – Stand Up To Cancer Pediatric Dream Team funding this research, Austin wouldn’t be here and a lot of other people wouldn’t be here either.”
With your help there’s no telling how many more dreams may come true… thanks to the Dream Team.
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