He stayed in the NICU at Memorial Hospital just long enough for me to make the trip via wheelchair to see him.. And what a beautiful little boy he was! Shortly afterwards, he was transported to another local hospital which had a higher level NICU unit because he needed to be intubated. Dr. Klain continued to try to figure out what was wrong with our sweet boy. He didn't waste much time contacting Lucile Packard Children's Hospital at Stanford University. They ruled out a heart defect with an echo-cardiogram, which the doctors at Stanford watched via internet. The following day, the decision was made to transport Nicklaus to Stanford. They sent a transport team in an ambulance to pick him up. They stopped by Memorial and wheeled him into my room so that I could say goodbye. I still hadn't even gotten to hold my baby.
I was released from the hospital the following morning. After a quick stop at the pharmacy for pain medication, Mike and I started the 2+ hour drive to Palo Alto - not exactly how I'd envisioned recovering from my c-section. Shortly before we arrived at Stanford, Nicklaus' new neonatologist, Dr. Benitz, had just made a critical discovery. When trying to insert an umbilical catheter into Nicklaus, he noticed that the catheter didn't take the straight path into his artery that it should have. He suspected a mass of some sort was causing the problem and ordered an x-ray. There was indeed a large mass in his chest, along his spinal column. It took up roughly the entire left side of his chest, and was pushing his lung completely out of place. This mass was the cause for all of the odd symptoms he'd exhibited since birth.
Mike and I got to the NICU and were told the bad news. "It's a tumor and we think it's a malignant one called neuroblastoma. We're just about positive that your baby has cancer." I remember Mike sinking to his knees in that tiny isolation ward, on the verge of fainting.
From that point on it was just a blur of dozens of tests, scans, and biopsies. The diagnosis of neuroblastoma was confirmed by his oncologist, Dr. Clare Twist. His cancer was considered Stage III (out of 4) because his tumor crossed the mid-line of his body (his spine). He was classified as being 'intermediate risk', but thankfully the biology and genetics of his tumor indicated that it was not the nasty, aggressive sort that is too often quite fatal. It had grown into the foramena (small holes) in at least 3 of his vertebrae and was displacing his spinal cord, but as yet had not caused any neurological damage. Thankfully it had not spread to his bone marrow or metastasized to any other parts of his body. The protocol for his treatment called for 8 rounds of chemo, followed by resection of the tumor. He had his first round of chemotherapy while still in the NICU unit when he was about one week old. We finally got to take him home after 3.5 weeks. Our lives for the next few months were turned upside down. Mike and I became medical 'experts' practically overnight. Our days were filled with visits from the home healthcare nurse to draw blood samples, flushing the lines of his Broviac catheter, changing its dressing, giving Nicklaus shots to stimulate his immune system, living like hermits to avoid bringing him into contact with anything - even a common cold - that could spell disaster due to his compromised immune system, and of course many emergency trips back to Stanford for transfusions of blood and platelets. But we were lucky. His tumor responded well to the chemo and after just 4 rounds, Dr. Craig Albanese (chief of pediatric surgery) was confident that he could successfully remove it. Of course, the surgery itself wasn't a walk in the park. We were told that in order to access the remaining tumor, Nicklaus would have to be cut open from his spine to the middle of his belly,and have his ribs spread apart - a radical thoracotomy.
On May 23, 2003 this amazing surgeon managed to remove the remaining tumor arthroscopically. Never in our wildest dreams did we dream that was even a possibility. So May 23rd marks the day that Nicklaus officially ended his treatment. He's been cancer-free ever since. Our tough little guy kicked that cancer's butt.
We still have periodic checkups and MRI's at Stanford, but their frequency decreases with time. For the most part, we're positive and confident that Nicklaus will remain healthy. But the bone-deep fear never goes away. Every time he gets a fever, our hearts skip more than a beat. Every time he complains of an 'owie', we can taste the fear. We know that fear will never completely go away. Thankfully, his odds are very good. But as his oncologist recently told us, "they're not 100%". That's why we continue to have checkups. And pray. We pray a lot.
Nicklaus' Page
