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CURE CHILDHOOD CANCER

2013 CURE's Kids Conquer Cancer One Day at a Time

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Austin Schuetz

Austin is your typical 5 year old boy. Wild, playful, energetic, imaginative, into "boy" things like cars, legos and playing cops and robbers. However, he differs from your average 5 year old boy in that he has been fighting for his life for the last 2 year, battling Acute Lymphoblastic Leukemia (ALL). 

 

He was diagnosed in May of 2011, shortly before his 3rd birthday. He bravely, and without questioning, had a port placed to receive his weekly chemotherapy, endured multiple lumbar punctures, bone marrow biopsies, countless oral medications and inpatient stays due to side effects of chemotherapy, and 8 days of cranial radiation in a years time. After entering the "maintenance" phase of treatment in April of 2012, life could settle down and return to a new "normal." Six months into that phase, after returning to daycare and enrolling in school, Austin was found to have relapsed at a routine monthly appointment. We spent 5 weeks in the hospital, giving him multiple chemotherapies to try and get him back into remission so that we could pursue doing an unrelated bone marrow transplant...the only thing to save his life. The stay was long and hard for both him and us as his parents...devestating and heartbreaking to have to see such a little boy go through so much pain and not get to be a normal child. He fought like the superman he is and recovered and was again cancer free. We luckily had a perfect match off of the bone marrow registry and proceeded to transplant in February of 2013. He sailed through transplant and amazed the staff at the hospital and was out in almost record time. 

 

At home, he had restrictions, but otherwise recovered quickly and returned to being active, healthy and had even grown all of his hair back. Two months after transplant, he was found to have residual disease on a bone marrow biopsy, which meant that there was a good chance that at some point in time, he would again relapse. We were faced with more devastation and uncertainty of the future of our child's life. Back in the hospital we go for more chemotherapy to kill the cancer again, a month long stay, and hair gone once again. The next step, and only other option, is to travel to Children's Hospital of Philadelphia for a remarkable and promising clinical trial (CART-19) to once again, save his life--third time's a charm. 

 

Throughout all of this ordeal, we have learned a lot and Austin has developed into such a smart, loving, caring little boy despite what he has been through. We never take any precious moment for granted, we don't plan and we live life to have no regrets. Our son has amazed and inspired hundreds of people and he never ceases to amaze me on a daily basis. His courage and resilience for what he goes through and endures daily has made me realize he is a real life superhero. My hero. His strength helps me to wake up each day and keep going for him. He will be a survivor and we will continue as a family to fight for a cure, not just for him, but for all children. 

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