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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!

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

Thank you for your continued prayers and support!




Latest Journal Update

Scans

Hello Friends - I can't believe it has been so long since I've posted on Caringbridge. I wanted to share that John's last set of scans continued to show good news.
One week from today, April 6th will be the 3 year anniversary of John's diagnosis of Stage IV High Risk neuroblastoma. If you would have told me on that day, three years from then our family would be where we are now....I never could have believed it!
Not a day goes by that I don't remind myself how lucky we are that John's little body responded to treatment as it did. Not a day goes by that I don't think of children that have been taken by this nasty cancer. Not a day goes by that I'm not aware that life can change in an instant. Each day is truly a gift and there's absolutely nothing more important than the people in it!
Love, Hope and Blessings,
Shelly
http://thegegenfive.com/2015/03/31/that-time-again-scansong-day/

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Comentarios

2 Comentarios

Stef Underwood
By The Underwoods
Hooray! Thanks for continuing to share these reports with us, Shelly. We think of you guys often. Each day is truly a gift. Love to all of you,
Margaret Cox
By Margaret Cox
I am so happy to hear that things are going so well for John and your whole family. Because of the PBS Cancer show, you and your family have really been on my mind. Love, Hope, and Blessings to you all!