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Justin’s Story

Justin was diagnosed with Neuroblastoma on 9/19/06. After completing the COG protocol, Justin was cancer free for 15 months before relapsing in his brain, May 2008 followed by multiple relapses through Feb 2013..  Justin participated in multiple studies at MSKCC in NYC and transferred to Grand Rapids, MI in the summer of 2012.  After a 5th cancer relapse in Feb. 2013, Justin transferred to CHoP to work with the great Dr. Maris.  MIBG therapy is underway with hopes of following the therapy up with a maintenance trail.  We are still looking for Justin's cure.

Justin's story begins in August 2006 with a few days of persistent headaches and stomach aches. The pain was so intense it woke him up at night screaming - nothing would comfort him, nothing. I took him to his pediatrician, and he did some blood work and sent us for a CT scan of the head. Everything was normal.  At that point we were referred to a neurologist for migraines.

After dealing with another week of pain and many sleepless nights, I was still unable to figure out his trigger. I tried many different things to try to minimize the pain, however to no avail. It hurt all of the time, even when we washed his hair.

Three weeks into this vicious circle, Justin's woke up unable to move his left arm/Shoulder. We thought he might have in jured it, so we took him in and we were sent for and Xray and more blood work.Upon returning home, I got a call telling me to take Justin to the Children's Hospital ER because his blood counts were off. So in a panicked state, I did. Lots of different tests went on that night and eventually they found a medicine, which stopped the pain. So we were sent home thinking Justin had JRA - juvenile rheumatoid arthritis. We had a follow up appt with the specialist pending some test results which would confirm JRA.

Well you know it, the specialist confirmed it was not JRA and told us to wean Justin off of the medicine. As we started to wean him from the medicine the pain came back. At this point it had been almost 6 weeks since all of this started.  No progress.  Uncle Craig came up to visit on the weekend and mentioned to us that Justin had a huge bump on his head. By Monday the intense pain had returned so I once again took him to the pediatrician. She felt has head and thought we should go in for another CT scan. The scan was scheduled for the next day - Tuesday, Sept. 19th.

When I picked Justin up from school he was in a lot of pain and complaining he could not walk. He was crying and very unhappy. We went for the CT scan and that is pretty much the end of the searching.  Justin's CT scan showed many cancer cells layered on top of his head, over his soft spot, causing his skull to split - which is why he had such intense pain over the last couple of weeks and the bump. In addition to the head, he had several cells of cancer on his face, his left shoulder and several ribs, and his femur and knees of both legs (why he couldn't walk).  Justin also had a tumor in his stomach. This indeed is the beginning of the journey for a child that was diagnosed with a rare cancer called Neuroblastoma.

Justin went through 6 intense rounds of chemo, stem cell harvests, a bone marrow transplant, radiation and ch14.18 antibody treatment in conjunction with 6 months of accutane.  Justin was declared cancer free during this and remained that way for 15 months.

In May 2008, the beast returned in his brain.  Justin underwent a 10 hour brain surgery and suffer vision loss in his left eye from pressure on the optic nerve. Justin went through 13 days of Full cranial/spinal radiation with a chemo boost.  He did 6 rounds of chemo and started antibody therapy in NYC in 3/2009 - 8h9 and 3f8.  Justin is currently NED.