Four were spoken that day. Four crushing, breathtaking words, “Your son has cancer.” My world, my life, and my dreams for my son’s future suddenly halted while the rest of the world kept going on around us on May 14, 2011. Only days before, I was deciding what theme to have for his third birthday party and what outfit he would wear for his pictures. Days later, my husband and I were signing consents for the specific protocol of poison that would be pumped into Austin and having to digest the laundry list of possible side effects. I was frozen, thinking about what if my son died, how would I go on living, and how was I going to explain to him what he would have to endure? As an adult oncology nurse, I have been present when those words have been uttered to the patients I cared for. I was so naive to think that this couldn’t happen to my family, let alone my baby. But here we were, now a statistic. Austin was one in 46 children diagnosed with cancer that day.
We dubbed Austin’s cancer in terms only a toddler would understand . . . cooties. Austin knew cooties were bad, and that is why he needed to get endless pokes in his chest and back, why he needed to sleep in the hospital, why he sometimes wouldn’t feel good, and why he would lose his hair. Austin knew he needed to fight so he could be with mom and dad forever. And fight Austin did. I have never known such spunk and energy, such determination and bravery as what I saw out of him. Austin would be the one to comfort me when I couldn’t control my tears, telling me that he was going to beat his cooties.
Austin was kicking leukemia’s butt, a fight that was to last 3½ years. Unfortunately, the rug was pulled out from under us, and we were sucker punched with the news that he had relapsed while on treatment. Now, our only option for treatment was a bone marrow transplant. By the grace of God, there was a stranger out there who was a perfect match and was willing to donate. Austin had his second chance at life in February 2013.
He did phenomenally well, and we were hoping this nightmare of childhood cancer was now over. But the leukemia wasn’t quite done fighting with his little body. Only two months after his transplant, we heard those words again, and I thought, now what? I knew our situation had gone from bad to worse to now grave. Austin’s chances of survival were less than 20%, and we were told he had three to six months to live.
Fortunately, all of our doors were not closed. Austin’s doctor informed us that there was a phase one clinical trial called CAR-T immunotherapy at the Children’s Hospital of Philadelphia. There were no other options. Every single bit of hope and prayer was put into this last remaining treatment, knowing it was a risk and never a guarantee that he would even survive or that it would work. Austin became enrolled as the 21st pediatric patient to ever receive engineered “killer T-cells” manufactured from a version of the HIV virus in October 2013. Today he is 15 years old and 10 years cancer-free. He is considered “cured.”
Austin would not be here today if it had not been for the science and research that fueled that trial. The Leukemia & Lymphoma Society (LLS) was a major contributor in keeping that research going when other governmental funding had ceased. This is why my involvement as a Dare to Dream Ambassador is so important to me. It is imperative that children are offered more specific, more targeted therapies in a quicker timeframe to have more success stories like Austin’s. LLS helped give Austin his miracle, now it’s time to help others get theirs. Without funding and support, this won’t be possible. This is why I will continue to Dare to Dream and make a world without blood cancer a reality.