Back in the “innocent” days, we thought bad things happened to other families, to other kids. We thought that disabilities were tragic, but that kids with disabilities hold “normal” children back. We thought that Cancer, while very sad, rarely happened to kids – and when it did, St. Jude’s Cancer Hospital spent enough money to cure them. What I refer to as innocent days, we now know were ignorant days. The life of a little 4-year old boy showed us the way…

Nicholas came into our life on June 21, 2002 – nearly Nine Weeks Premature. His lungs were not fully developed, and he needed a respirator to help him breathe. His skin and organs were still developing. His blood vessels were not ready for life outside the womb – but there he was.

During Nicholas’ 28 day stay in the hospital, he had multiple complications – from Apnea to PDA (blood backing up into his lungs) to RDS (respiratory distress), but he came home to a happy, healthy home – much like your home or your friends home. (No reason was ever given for the early pregnancy.)

Within a couple months, we knew something was wrong with Nicholas’ development, but had trouble admitting it to ourselves. There was trouble sitting, gagging on food, intense colic, and stiff muscles. At 6 months old, Nicholas was still not able to sit by himself, crawl, or hold a toy – he rarely moved. We were scared, hurt, and felt like we had a “broken” child. Therapies began, and with the help of amazing therapists, we saw some improvements. But Nicholas continued to miss important development milestones. At 1 year old, when other kids were starting to take their first steps, Nicholas was still trying to sit by himself the first time, and the day after his 1st birthday, he was diagnosed with Cerebral Palsy. At first, I thought of “Jerry’s Kid’s” (yes, wrong disease, I told you…ignorance). We didn’t want Nicholas to be different. We didn’t want him to have “special needs”. There had to be something that could fix this.

We searched tirelessly for the “silver bullet”, and it became clear that advancements for Cerebral Palsy are not what you would expect in the 21st century. We found funding for research is spent on other, more politically popular issues, leaving CP with standard treatments that will marginally improve his quality of life; OR more invasive, risky, expensive, and unproven procedures and treatments with limited track records of success. We wanted to do everything we could, and were being told different stories by different professionals on prognosis, and it was worse when researching on the internet. We looked and hoped that we would find the treatment that would cure his struggles, but it was obvious that this was a disability that has been left behind, and we were losing hope on Nicholas’ future.

Denial, Anger, Frustration, Sadness, Resentment were hard to suppress…until you watched Nicholas live his life. No preconceived notions on normal. No expectations on what he needed to accomplish. Slowly, with parents acting as the students of the teaching toddler, expectations disappeared, resentment disappeared, and was replaced with the feelings that every parent has for their child – joy, pride, love, and hope. He was EXACTLY like any other boy, maybe like your child. He loved to learn, read, play, ride bikes, swim, and watch sports – and he especially loved to show everyone his intoxicating smile. His body may have had difficulties, but his spirit wasn’t broken, it was thriving. Were it not for caring, talented professionals, and an incredibly motivated little boy, we wouldn’t have seen any improvements physically. His advancements were in spite of the lack of attention and funding to Cerebral Palsy, and we yearned for more…

Nicholas continued his hard work, and at 3 years old, was enrolled in preschool. Again, like any other child, likely yours, he loved school, to be with his classmates. But as summer entered fall, we began to notice Nicholas wasn’t himself. He struggled to stand, he wasn’t interested in playing, he was bringing his legs toward his stomach in discomfort, and all he wanted to do was lay down. At night, his discomfort became so uncomfortable, he would grind his teeth loud enough to wake me up, and on many nights, him too. With the struggles of CP limiting his ability to talk, he was unable to tell us what was hurting. We went to see Pediatricians, CP specialists, GI Doctors, Dentists, among others. Something was wrong, but NOT ONE DOCTOR had any ideas what was wrong with him. (There are only vague symptoms on how many pediatric cancers present to doctors, symptoms that could represent a dozen other ailments).

On a surprise Thanksgiving visit to Buffalo, NY, his pain reached a new high. We took him to the emergency room in Buffalo, and after 14 hours of testing and a 1 day delay in results, We were told Nicholas had a Pediatric Cancer known as Neuroblastoma. After a complex surgery to remove the solid tumor from near his Kidney, we were given the final diagnosis: STAGE 4 Neuroblastoma. Nothing can prepare you for this. Nothing.

Again, the same feelings. Extreme Anger, Deep Sadness, Numbing Fear, Trembling Frustration, Blind Denial. There is NO WAY he can have this – it happens to OTHER KIDS, not our family, Not our Nicholas. Intense tears of sadness for what he would have to endure for survival were hard to control.

We started researching our chances and our options. As we found with Cerebral Palsy, there were things that were helpful on some sites, and not on others. It was difficult to function, and frustration mounted as we spent hours looking for answers, hoping we’ve uncovered every possible stone.

We found that while advances have occurred, Pediatric Cancers as a whole have lagged significantly behind Adult Cancers. We must have been missing something - these are children, there must be huge dollars invested into cures…right? WRONG.

Nicholas was given about a 25% chance on 5 year survival. The road outlined to us was filled with harsh treatments (with long term effects), pain, illness, constant risk of death, and at the end of all of that – it may not work. There had to be something better than that…right? WRONG.

What Nicholas endured over the next 8 months, was in a word, Hell. 106 degree temperatures, painful mouth sores, throwing up for weeks at a time, violent illnesses, and in the end, a treatment that did not work. After pumping 7 rounds of intense chemotherapy into his 27 pound body (more in volume than a 200 pound adult), we were told that Nicholas’ Cancer had actually progressed. As he had shown us with Cerebral Palsy, Nicholas had fought with more courage, grace, spirit, and heart than I could have, than most adults could have. But his smile was always there, even on his worst days. He hadn’t given up, the treatments were just not effective enough. The options we were given would not cure him, it would be more painful treatments to keep him on earth longer.

After painful, emotional, heart-wrenching conversations, we decided to suspend treatments, and give Nicholas a “Best Days Ever” tour, making each day he had with us his Best Day. They were not only the 2 best months of his life, they were the best days of our life too. On September 11th, 2006, a day of heroes for our Nation, Our Hero Nicholas died. He was 4 years old.

Prior to Nicholas entering our life, had we had been asked to be the parents of a little boy that would have to struggle through life to do the simplest of things, battle an excruciating fight with the evil of Cancer, and Die at the age of 4, I’m not sure we would have signed up for it. Who would have? But Nicholas changed that. His soul was perfect, and he taught us physical struggles and diseases don’t define “normal”. He taught us being able to jump high doesn’t define “success”. And he taught us a child battling Cancer, and in some cases, losing that battle, is many things, but not a waste or tragic. Nicholas showed us that these kids are just that…kids, whether they can run fast or need to be pushed in a wheelchair, and whether they are swimming in the pool or locked in the house after chemo treatments. His time on earth, was in every sense, normal, and a success.

We are so incredibly proud to be Nicholas’ parents, we are thankful for the time we had with him. But it didn’t have to end at 4 years old. There could have been so much more, but there wasn’t because CP and Cancer attack our kids. Without warning, without prejudice, and without compassion. If you think Nicholas’ story is unique, well look around. 800,000 Americans are living today with Cerebral Palsy. I invite you to count up 300 children. At least one of them will get Cancer before they are 20. Nicholas’ story is NOT unique, and we have to do better. Our innocent days are behind us now. What you thought may have been someone else’s problem, can be ANY parent’s problem.

In honor of our precious son Nicholas, and in the honor of the hundreds of thousands of kids that battle through Cerebral Palsy and Pediatric Cancer, I introduce you to the Smiles From Nicholas foundation. I invite you to learn more about our mission and goals, and I invite you to join us wage our battle against the evil of Cancer and Cerebral Palsy. In the name of one, in honor of thousands.