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John’s Story

Our five year old son, John,  had been healthy and full of energy up to the end of February 2012. He loves EVERYTHING hockey and had just finished his first season as a Hastings Blue Mite with 141 goals (John and his day care  provider, Teresa would count the goals up each week.) John also enjoys everything his big brothers, Michael and Jeffrey love...sports, video games, and wrestling around. His big brown eyes have melted our hearts from day 1.

John had went to the doctor on February 27th and was diagnosed with Strep Throat. He received a shot of penicillin and seemed to recover. A few weeks later I noticed that he was experiencing night sweats and running a low-grade fever. This was a concern to us and we took him to the doctor, where once again he was diagnosed with strep throat. John took an oral antibiotic this time and through its course, continued with night sweats and running low - grade fevers. During the time he was on this second dose of antibiotics Jon had taken him back to the doctor. We were told to get a strep test after he was off the current antibiotic for a day or two. We did so and we prayed for another positive strep test, but it was negative. The next week we returned to the doctor and she ran blood tests and he had a TB test. The TB test was negative and the blood work was not "exciting", some highs and lows, but nothing too concerning. By this time we were noticing a slight limp in his walk and at times he complained that his leg hurt. On Tuesday, April 3rd I called our doctor again about the leg pain John was experiencing. She saw us that evening and said we were being referred to a specialist. The next day we received the call from the Oncology Specialist at Children's hospital to schedule an appointment.

It was here that we met Dr. Rawwas (John thought his name was Dr. Walrus and that is now what all the Gegens call him.). He has told us that he set a record from discovery to diagnosis, to beginning treatment.

John was admitted to Children's Hospital that Thursday evening with the thought he may have Leukemia, but it was not. A bone marrow test and CAT scan on Friday indicated that John has Neuroblastoma. He endured stomach surgery on Saturday for a biopsy of the tumor, surgery for placement of his Hickman, and on Monday he began the first day of his 5 day chemo for cycle 1.

Neuroblastoma is a cancer that develops from nerve cells. Only 650 new cases are diagnosed in the United States each year. The Neuroblastoma started in one of John's adrenal glands in his tummy and the tumor sits on top of his kidney. It has spread to his bone marrow as well.

Dr. Walrus and the other specialist on John's team have told us time and time again that this disease is treatable and can be curable. John has a long hard battle ahead of him, but he is a strong little boy and has a feisty spirit that will serve him well on this journey.

Our world has been turned completely upside down, but we are blessed to be at Children's Hospital and have this amazing team of specialist devoted to John's treatment.

From the very first day of this journey we have been surrounded by the prayers, love and support of family, friends, and even strangers. We are so very thankful and know that we are not alone in this battle.

John completed his roadmap of treatment in May of 2013. He endured 6 rounds of chemo, a stem cell transplant, 20 rounds of radiation, antibody therapy, and accutane treatment. In August we traveled to Helen DeVos Children's Hospital to enroll John in a clinical trial to hopefully prevent relapse. John has been NED (No Evidence of Disease) since December of 2012!

Update 10/9/15: Today John had his End of Treatment scans for the DFMO trial he has been on since August of 2013. His scans remain great and now rather than every 12 weeks, his next scan will be in 6 months. From there John will have his urine checked twice a month.

John is a happy and healthy third grader! We feel so blessed and are grateful for every single day! 

Thank you for your continued prayers and support!