Families for a CURE
A Tale of Two Cancers in One 16 Year Old
The First One: Neuroblastoma
When Chandler was just about to turn one we noticed that he stopped walking and even crawling. When diapering him, he seemed to wince when putting his legs up. We took him to our local pediatrician ,who referred us to an orthopaedist, who ultimately sent us to Children’s Healthcare of Atlanta at Scottish Rite. We really thought he had a severe bone infection. After test upon test we got the devastating news that they’d discovered a tumor in our baby’s tiny one year old body. They thought it was something called neuroblastoma based on its location but would have to biopsy to be sure. The tumor was actually wrapped around his aorta and required a huge abdominal incision ,almost hip to hip in order to get to it. We ultimately were told that indeed he had this neuroblastoma and the news continued to worsen as they found it was actually already at stage IV, the highest stage. The cancer was widespread throughout his entire little body. Not only did he have the abdominal tumor but another one was growing on the outside of his skull over his eye! The cancer had traveled through his body in his bloodstream ,throughout his bone marrow and was destroying his bones! My precious baby boy was hurting and very, very sick. The doctors placed Chandler on a Phase 3 clinical trial for high risk neuroblastoma. This trial consisted of all the tools available to them: lots of chemotherapy, surgery, and even more chemotherapy during two stem cell transplants , radiation,and even another kind of drug for another year at home. We basically lived in the hospital for about 9 months continually scanning and repeatedly checking on whether all these tools were saving our baby. They did save our baby. He earned some substantial scars, lost a significant amount of his hearing, went through a lot of nausea and sickness but he indeed survived against some very long odds. Every day after his diagnosis for years and years we feared the cancer might return, as it often did. We knew of many other children with similar situations who either did not survive the treatment or did not survive a relapse. It was a terrifying existence. But one day when Chandler reached about 4th or 5th grade, my worry about relapse waned. His doctor had always told us that once ten years passed it would be highly ,highly unlikely to return. So as that time approached my husband and I began to think of Chandler’s future. His long life future where he grew old and had grandchildren. Cancer just wasn’t our first thought everyday anymore.
The Second One: Glioblastoma Multiforme
Fast forward to May 2017. We just attended the end of the year Honors Day Assembly at Chandler’s school where among other things, Chandler was recognized for being in the top ten of his 750 or so 8th grade peers. This cancer mommy who is also a teacher was amazed at his stellar academics knowing how much he’d been through as a one year old coupled with his continued hearing loss. I remember after taking pictures of him with his awards asking him if he wanted to go home because he had been experiencing headaches.
Yep, headaches. Was I worried? No, lots of teenagers get headaches, right? But we did get him an appointment to see our family doctor. He never made it to that appointment. Before his appointment he began to vomit so we took him to our local emergency room. I told them of his cancer history, like we always have to do. Was I scared yet? No, not really. Neuroblastoma was in our rearview for 13 years. It couldn’t possibly be the cause. However at our local ER, it was confirmed that indeed the pain was not an ordinary headache but rather a huge tumor in his brain. Cancer again. We were devastated to put it mildly.
We headed back to Children’s Healthcare of Atlanta once again.Honestly, it was surreal being back in their care. So many old and new faces to learn. Of course it was assumed to begin with that this was a neuroblastoma relapse, but it was found to be actually a totally different cancer, glioblastoma multiforme. It was at the same area that was radiated above his eye 13 years earlier. Yes, we’d signed papers explaining risks of radiating him all those many years ago . One of which was the possibility of the radiation causing another cancer. We’d readily signed those papers to save our baby. Now we were signing more consents for the doctors to treat him again! This time Chandler is fighting a grade IV brain tumor
The tumor was removed and he began a regime of more daily radiation and chemotherapy for the entire summer. Weird, more radiation, right? That’s part of the problem, the tools we have to fight this are few and antiquated. The treatment failed , the tumor regrew. In January of 2018 Chandler, who was now 16, had a second brain surgery to remove the new mass. Chandler qualified for a very new trial of a combination of chemotherapy and immunotherapy after the tumor was removed a second time and that brings us to now. He is currently taking the chemotherapy and immunotherapy, getting blood counts checked, working on his black belt in taekwondo, driving, excelling academically, and living life knowing at any moment things could abruptly change.
The one good thing that came from these terrible times was our involvement in a wonderful organization ,based in Atlanta, called CURE Childhood Cancer. They helped us in many, many ways with practical things like providing suppers for cancer families on Thursday nights while inpatient, or giving us a gas card since we drive 200 miles from home for each treatment or check up, but more than that, they raise money for research to be done for pediatric cancers that would otherwise stay unfunded, thus never getting to the desperate families who are looking for cures. We are directly benefiting from their hard work as the experimental trial he is currently on was funded by CURE. They bring the science to the doctor’s office where it can be applied to real people like us. We love CURE because they are fighting alongside us. Their name says it all.
Chandler & his family are members of a group called “Families for a CURE” in South Georgia (formerly known as “Team Thomasville”). This growing group of volunteers & families affected by childhood cancer is passionate about helping children in their fight against cancer and have been fundraising for CURE since 2010.
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