September is Childhood Cancer Awareness Month. Check out this fabulous artwork we received from a brave survivor of childhood cancer. Here is the story his mom shared with us...
Austin was diagnosed with acute lymphoblastic leukemia in May of 2011 just a month shy of his 3rd birthday. Austin did fairly well with his treatment and his resilience was amazing to everyone. He rarely complained and he had so much energy even after chemotherapy and radiation. He truly just thought that this is what all 3 year olds did with their lives.
Austin's treatment was to be a total of 3 and a 1/2 years, the 1st year being intense chemotherapy and cranial radiation since he had disease in his brain. Once that was done we entered the maintenance phase where he would get oral chemotherapy daily and only have to go into the hospital once a month for IV chemotherapy.
Unfortunately 6 months into this phase Austin relapsed. Are only option at that point since he relapse while on treatment was a bone marrow transplant. We had to search the bone marrow registry and hope that he had a match and fortunately he did. After more intense chemotherapy and total body radiation, Austin had his transplant. February 28th 2013.
Austin once again did amazing through the whole process where most people would complain and feel like they were dying. We were in the hospital a total of 6 weeks and around Easter time were able to go home.
We then were prepared to spend our time in a bubble since Austin was susceptible to infections that could kill him. At austin's to month post transplant check up, he had a bone marrow biopsy which would indicate that his cancer would return. At this point I knew that we were out of options.
We tried weaning him off of his anti rejection drugs in hopes that the donor cells would kick in and clean up the rest of the leukemia but unfortunately that didn't work. The doctor Informed us that if we could not find anything else to do for him he would have about 3 to 6 months to live.
Fortunately his doctor is a part of the same baldereck's and stand up to cancer dream team and knew a lot about the research going on with childhood cancer. There was a clinical trial happening only in Philadelphia, a phase one common in which Austin luckily qualified for. It was our last roll of the dice to save our son.
The trial was CAR-T immunotherapy. Austin's T cells were collected on a apheresis machine. They were then sent out to a lab to be genetically engineered to kill his cancer using a virus, the HIV virus. Our family relocated to Philadelphia for Austin to receive her cells once they were done being engineered and on October 1st and 2nd of 2013 Austin was the 21st pediatric patient in the world to receive a therapy like this.
As of today, Austin will be 12 years old and is still cancer free! He still has genetically modified cells inside of him that are helping to combat his cancer and make sure that it doesn't return again.
We are thankful for the opportunity that we were able to receive this kind of treatments. I learned that the leukemia and lymphoma society helped support and fund of this trial and I truly believe that without their help he would not be here today.
My family and I are very supportive of the Leukemia and Lymphoma society. By participating in the light the night walk yearly raising close to $20,000 each year. I am a board member for the Wisconsin chapter, I have Ran and won for woman of the year, and helped support to students of the year, one of which just in March won by raising over $70,000.
It is very important to me to share my son story as I feel it is very unique and my hope is that I can help another family that is in our shoes and provide the hope that a cure is out there.