Griffin's Journey
On August 18th, 2013, the day after Griffin's 6th birthday, our world changed as we knew it. Griffin was complaining of headaches on and off for a few weeks, along with random stomach aches. We didn't think much of these symptoms as they never slowed him down. As fast as they came on, they would leave. It wasn't until the day of his birthday he experienced a very bad headache, and then immediately threw up afterwards. Something didn't sit right with us so we brought Griffin to his pediatrician the following morning. We were thinking he may have had a concussion. He was a super athlete, and hockey was a huge part of his life. A few days prior, he fell on the ice so we thought that might be the cause. After a detailed visit at the pediatricians office, when it came time for the neurological test, Griffin failed it. By this time he couldn't even walk a straight line, which is something he was doing for years! We were sent right to the ER at Upstate Golisano Children's Hospital for an MRI of the brain.
As Adam, my parents, and myself sat in the waiting room, I knew "tumor" was a possibility because the doctors briefly mentioned it in the list of "what it could be," but for me, it wasn't a possibility for my child -- for my family! When the doctors came into the waiting room, I will never forget his words: "Griffin has been moved to the PICU (Pediatric Intensive Care Unit), as he has a very large tumor in the center of his brain." My husband fell to his knees, my parents stared in utter disbelief, and I left the room. Our lives forever changed that day... on August 18th, 2013, our life would never, ever be the same.
We later learned Griffin had Stage 4 Glioblastoma Multiform, a rare form of brain cancer in children with no cure. There were options to prolong life in hopes of future medical advancements, but no solid cure. He had surgery on August 29th to remove as much of the tumor as possible. He underwent 33 radiation treatments at Upstate Golisano Children's hospital, in conjunction with chemotherapy. In addition, he went through countless hours of physical therapy and occupational therapy to regain his strength on his right side, due to deficits he received from his surgery.
After a very long process, Griffin was approved by the FDA for Compassionate Use of a vaccine that currently was in the third phase of a clinical trial, a vaccine that was very promising in adults. We saved his tumor in the hope that this trial would be an option for Griffin. This type of cancer returns with a vengeance. This is what happened to Griffin in July 2014. Unfortunately, at this time our hope with the vaccine was crushed. There was not enough tumor for the vaccine to be made. Sadly, with no other options, on September 1st, Griffin came home on Hospice care and took his last breath on September 12, 2014.
As Adam, my parents, and myself sat in the waiting room, I knew "tumor" was a possibility because the doctors briefly mentioned it in the list of "what it could be," but for me, it wasn't a possibility for my child -- for my family! When the doctors came into the waiting room, I will never forget his words: "Griffin has been moved to the PICU (Pediatric Intensive Care Unit), as he has a very large tumor in the center of his brain." My husband fell to his knees, my parents stared in utter disbelief, and I left the room. Our lives forever changed that day... on August 18th, 2013, our life would never, ever be the same.
We later learned Griffin had Stage 4 Glioblastoma Multiform, a rare form of brain cancer in children with no cure. There were options to prolong life in hopes of future medical advancements, but no solid cure. He had surgery on August 29th to remove as much of the tumor as possible. He underwent 33 radiation treatments at Upstate Golisano Children's hospital, in conjunction with chemotherapy. In addition, he went through countless hours of physical therapy and occupational therapy to regain his strength on his right side, due to deficits he received from his surgery.
After a very long process, Griffin was approved by the FDA for Compassionate Use of a vaccine that currently was in the third phase of a clinical trial, a vaccine that was very promising in adults. We saved his tumor in the hope that this trial would be an option for Griffin. This type of cancer returns with a vengeance. This is what happened to Griffin in July 2014. Unfortunately, at this time our hope with the vaccine was crushed. There was not enough tumor for the vaccine to be made. Sadly, with no other options, on September 1st, Griffin came home on Hospice care and took his last breath on September 12, 2014.