Posted: September 7, 2016
4 1/2 Months Old at Diagnosis
Written by Katie Krispin
William “Will” Krispin was born on December 14, 2013. Just four and a half short months later, he developed a low-grade fever. I decided to bring him to urgent care.
The doctor noticed his breathing was very labored and decided to do a chest x-ray. She saw cloudiness in his lungs and told us that she was admitting us to Children’s Hospital for pneumonia.
When we arrived at the hospital, the doctors decided to re-do the x-rays and saw something more than pneumonia. They saw a mass. The very next morning, we had a CT scan performed which indeed confirmed that the mass was a tumor; neuroblastoma. He was then diagnosed with stage 4, intermediate risk neuroblastoma.
The tumor was about the size of an adult’s fist in his upper chest on the right side with calcifications onto his spine. Because the tumor in the chest was so massive for his size and it was compressing onto his lungs, the doctor’s primary focus was his breathing. Scans later showed that he also had issues with calcifications on his spine. It was so bad that it completely compressed his spinal cord, cutting off all nerve signals to his lower half making him a paraplegic.
We had a couple of doctors tell us that Will may never walk and to prepare for life in a wheelchair. His oncologist told us that they needed to treat his cancer more aggressively, and so began our eight chemotherapy treatments (stage 4 high risk) with two rounds of radiation. After the final chemotherapy, they would then decide to do surgery to remove the chest tumor.
Throughout his treatment, his breathing became worse, requiring a breathing tube and then later on, a tracheostomy was performed. After 91 days in the hospital, we finally made it home. For the next few months we still returned to the hospital for chemotherapy. We were able to have his tracheostomy removed before his first birthday.
I am happy to say that that we have been NED since October 2014 – almost two years! This past year our primary focus is therapy, therapy, therapy. We are doing everything we can do to get this guy up and walking. My motto is never say never and to have hope. We’ll prove those doctors wrong!
The reason why research and raising awareness for funding is so important to us is simple; kids shouldn’t have cancer. Kids need to be out running, playing, exploring and making new friends. Doing what they do best. They shouldn’t be living in hospitals, being away from their friends/school or even family members. They shouldn’t feel sick all the time and lose their hair. They shouldn’t have to face long term affects like hearing loss or the ability to ever walk like my son Will. They shouldn’t have to fear going to the doctor because of the big scan machines and think “what if my cancer is back?” They shouldn’t ever have to ask their mommies and daddies if they are going to die. Cancer robs childhood lives.
The money that is raised for research and raising awareness for pediatric funding can help a family one day to not have their child’s life robbed from cancer.
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