Justin M. - Quilt Finished in 2008

Born: April, 28, 2003

Illness: Stage IV Neuroblastoma and relapse NB

A Thank You From Justin's Family!

October 29, 2008

Hi everyone,

We received the FROGGIE today and Justin was very, very excited when he opened the box.  He hooped and hollered for 5 minutes – “Yippee, Yahoo, YEAH!, Froggie is here” (over and over again).  He then picked it up, immediately got into bed and underneath Froggie.  He started naming the frogs and his favorite is King Frog.  He is in his room right now talking about how much he loves his big blanket and he is talking about how awesome it is!!! 

Thank you for thinking of Justin – he is very, very happy right now!

Thanks again, 

Jeff, Lori and Justin

Justin M.'s Story

Written by Justin's mom in 2008

Justin's story begins in August 2006 with a few days of persistent headaches and stomach aches. These pains were so bad they woke him up at night screaming - nothing would comfort him, nothing. Every time I asked Justin were it hurt, he always said the same place. I took him to see Dr. Kurtz, his pediatrician, and he did some blood work and sent us for a CT scan of the head. The blood work came back fine as did the CT scan. At that point we were referred to Dr. Miller, a neurologist for migraines (apparently there is a type of migraine that is called an abdominal migraine). After review of the scans it was indeed confirmed he had migraines (which Kayla and I also have and it is hereditary, so we agreed).

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 pulled it out of socket, so we once again took him into the Dr Kurtz and he sent us for and Xray and we did more blood work. Just as we returned home from the Xray, I got a frantic call from Dr. Kurtz telling me to take Justin to the Children's Hospital emergency room because his blood counts were way 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 the next day thinking Justin had JRA - juvenile rheumatoid arthritis. We had an appt at the end of the week to follow up with the specialist after some test results came back verifying it was indeed 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. What we knew was his CT scan was clean, he did not have JRA and he was still in pain. Uncle Craig came up to visit on the weekend and mentioned to us that Justin had a huge bump on his head, which was sore to the touch. We thought he maybe had a little run in with Kelly's doll, but vowed to watch it. By Monday the full on pain had returned so I once again took him to the pediatrician - Dr. Kurtz was out of the office, however Dr. Stevens was in. She felt has head and thought we should once again go in for another CT scan. The scan was scheduled for the next day - Tuesday, Sept. 19th.

I picked Justin up from school on Tuesday morning, 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 that and the start of a whole new life. Justin's CT scan showed so that 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 that Uncle Craig felt. 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). In addition to all of that, 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.