Dirk was diagnosed with Stage IV High Risk neuroblastoma on August 1st, 2019 after several weeks of leg pain and inability to bear weight on his right leg. We have been blessed to have Dirk treated at Helen DeVos Children’s Hospital which is within 10 miles of our home. Thankfully, HDVCH is also a part of the Beat Childhood Cancer Consortium which has a trial specific to Stage IV High Risk neuroblastoma. This trial has given us so much hope as DFMO has been shown to increase the Stage IV neuroblastoma patients’ chances of survival.
Dirk has spent the last 14 months enduring 8 cycles of chemotherapy, a significant resection surgery (his scar reaches from his upper back and wraps around his body to his pelvic bone), a stem cell transplant with high dose chemo that required 6+ weeks in the hospital due to complications, 12 doses of radiation, and now he is currently in Cycle 5 of Immunotherapy paired with Accutane and DFMO. Currently, Dirk still has a small tumor present in his pelvis. We are hopeful that the tumor is not active disease, and that Dirk will progress to the maintenance phase of treatment which involves DFMO only. We are currently waiting on determination of next steps from his Oncology team.
This journey has changed our family forever, and we hope to help others experiencing Childhood Cancer. Neuroblastoma is a very aggressive cancer, and the treatment plan is grueling. That is why we have teamed up with Beat CC so we can help fund more research and clinical trials to help those fighting and those yet to fight. We need better treatments for our sweet children. Thank you for all your prayers and support! We appreciate all the help we can get in the fight against neuroblastoma. Please join us and support Beat Childhood Cancer.
