About Nicholas Lee (Noodle)

Nicholas Lee, babyWhen Nicholas was five months old, he started running a fever. It wasn’t even a very high one- it hovered around 100.8. He had had a cold when he was 6 weeks old, so we figured he’d just caught another one. I told myself, “He’s had fevers before, and he’ll have fevers again.  No big deal.” I didn’t want to be one of those annoying new mothers who freaks out every time her baby hiccups. A week later he was still running a low-grade fever, so we decided to do a blood test.  That was when our entire world was turned upside down.

On May 17, 2005, when he was 5 and a half months old Nicholas was diagnosed with Acute Myelogenous Leukemia, a particularly nasty form of Leukemia that’s rarely seen in children. Normally AML would be treated with a bone marrow transplant, but the cancer had forced its way into Nicholas’s central nervous system. Since we would have had to irradiate Nicholas’s brain and spine, causing untold amounts of damage, a transplant was not an option. Instead we fought the cancer with really aggressive chemo. We were told he had a 10% chance of surviving the induction, or starting phase of chemo. We were lucky- if he had been diagnosed even five years before, AML would have been an immediate death sentence. I’ll never get over the shock and horror of hearing the doctor say, “IF he lives until Tuesday, we can start him on this chemotherapy regimen.” The following three days are all a blur for me, but Nicholas stubbornly fought and won the first of what was to be many battles for his life.

We spent the next six months living in a sterile room at Children’s Hospital Los Angeles.  Nicholas was the darling of the Hem/Onc ward, as he flirted shamelessly with all his nurses. No matter how sick he was, he always had a smile for everyone. Even when his lungs were flooded and he had to fight for every breath, he still managed to give his daddy a weak, but heartfelt, grin.

He was supposed to receive five rounds of chemo, but we had to quit after four. The side effects of the chemo were so toxic that we were fairly certain another round would kill him. It was a difficult decision to make. We had no guarantee we had beaten the cancer yet, but all we could do was cross our fingers and hope for the best. Even after he finished his chemo regimen, we had to wait three years before we could say for sure that he was cured. We tried to enjoy ourselves as much as we could, because if the worst happened, we wanted to know that Nicholas had lived his far-too-brief life to the fullest. It was a terrifyingly precarious time, and every bump or bruise was cause for concern.

Nicholas Lee, 2014Nicholas is nine-years-old now, but the ghost of chemo still haunts him to this day. He lost his hearing and had to get bilateral cochlear implants. One of the chemo agents we used causes learning disabilities when used on children, so now Nicholas attends a special school for kids with “learning differences.” We also have to keep a sharp eye on his other organs, screening them every year to make sure there was no lasting damage done by the chemo. Our whole family does a lot of work with the Leukemia & Lymphoma Society to raise money for cancer research in our spare time. (Nicholas was their 2012 Boy of the Year!) I wrote a book called “The Noodle Chronicles: Everything I Know About Cheating Death I Learned From My Kid” about the whole cancer experience, and so far we have donated all the proceeds to the LLS.