About Ben and his battle with Neuroblastoma

About Ben and his battle with Neuroblastoma

Ben was born in June, 2001 and was a very happy, normally developing and healthy child. In late 2003 I noticed that Ben was constantly fighting viruses and had an occasional limp. Of course, in the meetings with his pediatrician and various Urgent Care staff I was told:

a) he had whatever bug was going around,

b) he was growing and that could occasionally cause limping (which he did not exhibit consistently)

c) I was a nervous “first-time parent” and shouldn’t worry so much.

All of that changed mid-February, 2004. Ben was 2 1/2 and trying to be a normal toddler. One day, after church, he was running around with some friends. When his playmates ran up some steps onto the stage, Ben tried to follow but collapsed at the bottom of the stairs. It was at that point that Ben’s father and I knew something was seriously wrong.

We spent the following week pursuing specialists’ opinions of what could possibly be wrong. On Thursday, February 19, 2004, Ben was sent to the ER by a physician who thought he might have a hip infection. After hours in the ER enduring countless scans and tests, we were admitted to the Infectious Disease Unit of our local Children’s Hospital.

Within a couple of days we learned what was plaguing Ben. He didn’t have a hip infection. He had Neuroblastoma, which is a rare pediatric cancer that attacks the sympathetic nervous system. An ultrasound discovered that Ben’s pelvis was full of holes, cancer had literally eaten through his hips and that’s why he had been limping.

Ben’s exact diagnosis was Neuroblastoma, Stage IV, high risk for relapse, with an unfavorable tumor and the n-myc component “unamplified”. Statistically speaking, he had a 20-30% chance for survival. He was going to need copious amounts of chemotherapy, numerous surgeries to remove the tumor, a bone marrow transplant, radiation therapy and then an experimental drug called ch14.18, which would hopefully teach his body to fight off any attempts of recurrent Neuroblastoma.

It was a long and grueling road. He endured fifteen months of intensive therapy, painful procedures and horrible side-effects. Shortly before his fourth birthday, Ben was declared to have no evidence of disease! Everything progressed beautifully. He went through scans every three months for a couple of years. Then he graduated to scanning every six months. For four years Ben had remained disease-free.

Then, in 2009, a week after Ben turned eight, he went through another set of scans. If these scans were clear then Ben would graduate to having annual scans. Unfortunately, this particular set of scans found a mass growing behind Ben’s heart. It was attached to a rib and the pleura of the lung. Neuroblastoma had returned.

Ben spent the rest of 2009 enduring more chemotherapy, surgeries, radiation and painful procedures. We learned that he was disease-free again in 2010. He was then enrolled in a study at Memorial Sloan Kettering Cancer Center in Manhattan for the 3F8 antibody protocol. 3F8 has been successful in teaching the body to attack newly forming Neuroblastoma cells. It was a very painful procedure. Every eight weeks he traveled to New York City to receive a week-long infusion in hopes of eradicating this nasty beast that keeps trying to take his life.

Ben finished his 3F8 therapy in June, 2012. He was then enrolled in the DFMO phase II trial that Dr. Scholler was running in Michigan – we chose to go to the Kansas City satellite and treat under Dr. Neville. This study consisted of taking six pills every day in hopes that any returning tumor would be very slow growing.

Unfortunately, Ben was only on that study for 10 months before relapsing. We learned of this tragic news on May 16, 2013. We’re currently waiting to see what our treatment options are.

Today, Ben is 12 years old. He just finished fifth grade in Aurora, Colorado. He loves video games (especially Mario Brothers) and building unique creations with his Legos. When he grows up he wants to be an architect. Or a science teacher. Or a video game designer. And while trying to maintain some semblance of a normal life, he continues to endure treatment like a champ. He’s been through so much. He’s lost a lot of friends to the very same disease that he’s battling. His heart is as big as the moon and breaks at the unfairness of it all – often forgetting that he, too, is battling a beast that is hell-bent on tearing him apart.

Please support my Benjamin on this tedious and heart-wrenching journey. He will never know life without the threat of cancer looming over his shoulder. I will do all that’s possible to ensure that Ben gets to enjoy a long, healthy life, but we need to raise awareness. We need to wake up our politicians. We need to make some noise. If we don’t do it now, we live with the possibility that we’ll lose our Ben.