John
Our lives were forever changed that day as we were thrust into a world where our child had cancer. A cancer we had never heard of before… stage IV, high risk neuroblastoma.
Near the end of his first hockey season during the later winter of 2012, our five ½ year old son John came down with a low grade fever that wouldn’t go away. Along with the fever came night sweats, terrible drenching his pajamas and bedding, night sweats. A trip to the doctor confirmed that John had strep. He seemed to improve during the course of the antibiotics, but then complaints of leg pain would come and go. Back to the doctor we went and strep was confirmed for the second time. Now along with the low-grade fevers, terrible night sweats and leg pain, came the loss of appetite. Our concerns grew as this just didn’t “feel” like strep and we was calling the doctor every few days expressing our concerns. John’s leg pain had been becoming more regular and now he was also mentioning back pain.
It was decided that John would be rechecked again for strep after the 10 day course of antibiotics and if it came back negative he would need to go to a specialist. It came back negative and our hearts sank. Two days later John had an appointment at Children’s Hospital Minneapolis Cancer and Blood disorders clinic.
It was decided that John would be rechecked again for strep after the 10 day course of antibiotics and if it came back negative he would need to go to a specialist. It came back negative and our hearts sank. Two days later John had an appointment at Children’s Hospital Minneapolis Cancer and Blood disorders clinic.
The morning of the appointment John had so much pain in his leg he wouldn’t walk on it. His dad watched him as he crawled to the bathroom for his shower. At that moment we realized John was a very sick little boy and the thoughts of all the possibilities of why was terrifying.
Our lives were forever changed that day as we were thrust into a world where our child had cancer. A cancer we had never heard of before… stage IV, high risk neuroblastoma. We would soon learn what a horrible cancer it was. John had a tumor above his left adrenal gland, cancer in his legs, shoulders and skull. His bone marrow was over 90% impacted with Neuroblastoma cells. The reality of the situation was nothing less than horrific.
Things moved quickly once John was diagnosed. The next day he had his Hickman line placed, the following day he received his first chemo treatment. Our lives no longer revolved around our sons’ hockey schedules, but rather John’s treatment schedule and ridding his little body of the horrible cancer.
While John’s little body was beaten down and our family’s world was turned completely upside down, he endured chemotherapy, surgeries, blood transfusions, scans, shots, countless days in the hospital, stem cell transplant, radiation, ch14.18 antibody therapy and Accutane. He amazed us each and every step of the way as he took each treatment, each poke and prod, Hickman flushes, the MicKey tube in his stomach, the tube feedings, the endless medications, the relentless nausea, the diarrhea, the mouth sores, the peeling skin…he endured each and every step as with courage and determination as he knew it was getting him closer to kicking his cancer.
In December of 2012 John was declared NED! While we rejoiced in this wonderful news and knew we were beyond blessed that John’s body had responded so well to treatment, we couldn’t help but worry. As John headed into the CH.14. 18 antibody phase we could see the end of treatment in site. Exciting, as it was to think of John being done with treatment, it was also terrifying. He is high risk for relapse. (We stop and do nothing and keep our fingers crossed that the beast doesn’t return?) We felt there had to be more.
Over several months we reached out to John’s doctors, researched on the Internet, talked with other parents and learned of DFMO. These conversations led us to Dr. Sholler at Helen De Vos Children’s Hospital in Grand Rapids Michigan in August of 2013. Together we decided the next best step for John would be to enroll him in the DFMO study. Soon after we were very grateful when the study opened up much closer to home at Children’s Hospital and Clinics of Minnesota.
As of August 2014 John has been on the DFMO trial for one year and he continues to thrive. He will be entering the 2nd grade and he will be hitting the ice soon for a new hockey season. He is a bundle of energy mixed with a little feistiness. Not a day goes by that we don’t remind ourselves how truly blessed we are.
All those months back when we were trying to decide the next step for John at the end of his treatment, part of us wanted him to just be done with all it, to put it behind him, The reality was we knew too well what relapsed Neuroblastoma could mean for John and we wanted to do everything possible to keep him healthy and to give him and our family hope for the future. For us….that hope is DFMO.
Shelly Gegegn | November, 2014
