As a parent, when your son or daughter is diagnosed with Cancer, your heart breaks. You want to do whatever you can to make them better…inspire them so they will endure the darkness of the tunnel to see the light at the other end. Then one day, you look around, and you realize they are actually holding you up – they become the inspiration to you. Almost without exception, children with cancer have this effect on everyone they touch. Nicholas, without ever saying a word or taking a step, was a shining example…

During the summer of 2005, life in our family seemed perfect. We were enjoying our first summer in California. Paul was healthy. Nicholas was thriving in therapy, and making progress battling the effects of Cerebral Palsy. Plans were being made for Nicholas to start school. As a family, we were enjoying our time together. In late August, we had our first hint that something may not be right.

We had taken Nicholas to the Doctor for his checkup. Our normal Pediatrician was not in the office, so we had a different doctor. During the checkup, he noticed the “bumps” on his skull, which looked like something was pushing the bones around his eyes out. He suggested that we contact the center taking care of his Cerebral Palsy to get them checked out.

Our response was mixed, and one point, we could not move or talk because we were so scared. The next minute we were saying to ourselves…”no way, Nicholas would not be asked to endure CP AND CANCER!” We looked at pictures from the time he was a baby, and those bumps were always there. We decided to get him checked out again, to see if there was someplace specific to get him checked out. To our surprise, nothing was noted in Nicholas’ chart. We were told if it was something important, we would have seen something in the report. Since it wasn’t there, the nurse said not to worry about it. To be safe, we called the UCLA CP clinic, and told them about the pediatrician’s comments. They said minor skull deformities are common in CP, and said not to worry about it…2 doctors, not concerned…so we let it go.

In the fall of 2005, we noticed something “different” about Nicholas. We had given him a series of Botox injections to help with muscle stiffness of Cerebral Palsy, and he seemed to regress from that point. Nicholas would pull his leg into his chest, and wanted to lay flat on the ground. He didn’t want to work as hard as we were used to in therapies. He was grinding is teeth constantly, his head seemed to be hurting - clearly he was not comfortable. Since CP limited his speech, he couldn’t tell us something was wrong, or where it hurt.

So we went to the UCLA CP Clinic to see if the Botox was the cause of the pain. They saw what we saw – a little boy in pain. Their conclusion was that something was distressing him, but it was not muscle pain. On the way home, I remember thinking that it was time to change CP clinics – in our eyes they were missing something, right?

Over the next several weeks, we took 2 more trips to the pediatrician, and another visit to the dentist, our pediatrician came to the conclusion that Nicholas’ acid reflux had returned. It was causing him pain, bringing his legs up, and causing him to grind his teeth. Sounds logical, right? We went with it, started the Prilosec medicine, and went off to a surprise Thanksgiving visit to Buffalo, our hometown.

Thanksgiving was a very difficult day. Nicholas was only comfortable straddling an adult, mostly his Dad. He was extremely pale, and could not eat. After a night where we slept a few hours, it was decided we would go to Buffalo Children’s Hospital’s emergency room. Nicholas went through countless tests – GI tests, X-rays, CT Scan, among many, many others. And after a 14 hour day in the ER, the conclusion was…Acid Reflux.

So, we went home, comforted, with a plan to get more testing done when we returned to California. Our mini vacation continued – until Dinner the following day. We received a call from the attending ER at the hospital. Upon a second look at the CT, they had noticed a mass on his adrenal gland. The rest of a conversation was a blur. All we heard was mass, Neuroblastoma, Cancer.

There are no words that can describe that moment. I hope that as a parent, you never have to experience it. Nicholas was sitting with his Grandma, reading a book. We were on the phone with a doctor, telling us that he may die?! It was impossible to comprehend – these things don’t happen to us, they happen to others, what did this poor, innocent child who already has been through enough, do to be saddled with a life or death situation? We found out he did nothing. This could have happened to any child in any family – but our family, and Nicholas, just drew the short straw.

The roller coaster officially began. 72 hours after we found out Nicholas had a mass, we were in a hospital room, beginning more tests. We knew there was something there that needed to come out, but we didn’t know what would happen next.

The Pediatric Oncology floor is a surreal place, a floor no one expects to be on. Bald children, some playing (with their IV pole trailing behind), some being walked by their parents, and some in agony as treatments have worn them down. As the elevator door opens to that floor for the first time, it is almost too much. For the children, they show signs of being scared, but then, within a short amount of time, they begin to lift you up. For us, we were walking around the floor, one of us holding Nicholas (it was the only way he was comfortable), another pushing his IV pole. Nicholas was hurting. But…as we continued to walk, he would lift his head up, raise his hand (difficult with his CP, compounded by his pain), and say “hi-ya” to the nurses as we walked passed. He was hurting, but his spirit wasn’t. » Page 2