NicholasNicholas came into our lives on June 21, 2002 nearly nine weeks premature.

His lungs were not fully developed, and he needed a respirator to help him breathe.  During Nicholas’ 28 day stay in the NICU, he had multiple complications including Apnea, PDA (blood backing up into his lungs) and RDS (respiratory distress).

By the time Nicholas as 6 months old, we knew something was wrong with his development.  His stiff muscles made it impossible for him to sit, roll or even hold a toy.

We were scared, and felt like we had a “broken” child. Physical therapy and Occupational therapy began, and with the help of his therapists, we saw some improvements.

But Nicholas continued to miss important developmental milestones. At 1 year old, when other kids were starting to take their first steps, Nicholas was still trying to sit by himself, roll over and crawl.  The day after his 1st birthday, he was diagnosed with Cerebral Palsy.

Although thankful to finally have answers, we didn’t want him to have “special needs”.

Denial, anger and frustration were hard to suppress…until you watched Nicholas live his life. He had no preconceived notions of normal. No expectations of what he needed to accomplish.

Slowly, our resentment disappeared, and those feelings were replaced with the feelings that every parent has for their child – pride, love, and hope. He was EXACTLY like any other boy. 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.

Nicholas continued to work hard, and at 3 years old, was enrolled in preschool.  He was able to stand for periods of time in a stander, bearing weight on his legs.  He was able to raise his hands above his head, and move his arms with a semi-fluid motion.  He was able to open and close his hands, not quite able to isolate his index finger and thumb, but he could at least hold onto a cup or cookie.  He could chew solid foods and his vocubulary included 22 words.

His progress was truly amazing to witness.

But as summer entered fall, a dramatic change occurred. He struggled to stand, he wasn’t interested in playing, he was bringing his legs toward his stomach and screaming in discomfort, and all he wanted to do was lay down.  With CP limiting his ability to talk, he was unable to tell us what was hurting. We paid multiple visits to our pediatrician, CP specialists, GI doctor and dentist.

His pain reached an unbearable point over the Thanksgiving holiday. We took him to the emergency room , and after 14 hours of testing, 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 news.

Nicholas was given a 25% chance on 5 year survival. The eight month treatment plan that was outlined to us was filled with harsh, painful treatments (with long term side effects) and long hospital stays.  And at the end of it all, the treatment may not work.

What Nicholas endured during those months is unimaginable.  And in the end, the treatment did not work.  His cancer had actually progressed.

As he had shown us with Cerebral Palsy, Nicholas fought cancer with grace, spirit, and heart. His smile was always there, even on his worst days.

We decided to suspend treatments, and give Nicholas a “Best Days Ever” tour, making each day he had with us his Best Day. On September 11th, 2006, Nicholas passed away. He was 4 years old.

Nicholas’ cancer journey was documented at: