Portraits of the Jersey Shore Jersey Shore Neuroblastoma Boy Robert Wood Johnson Cancer Survivor_

Robert Wood Johnson Cancer Survivor

“My pregnancy with Xander (POTJS note: Pronounced “Zander,” the shorter boy in her left arm) was totally normal and healthy. He was a colicky baby, but nothing out of the norm. A few days before his first birthday, he woke up from his nap screaming like I never heard before. So much so that I thought he broke his foot in the crib. But when I got upstairs to him, nothing was broken. I took him to the hospital and they looked at him head to toe with ultrasounds and x-rays, and they couldn’t find anything wrong with him. So we were sent home.

“After that he would have these times when he would start crying again, sometimes screaming, from pain. They became what we called ‘episodes.’ Over the next few days the doctors kept giving him tests to find what was wrong, and they kept finding nothing wrong with him. More days would go by, and still the crying. And we would take him to the hospital yet again. Finally on the 7th ultrasound they found what was wrong. They told me, ‘There is a tumor wrapped around your son’s heart.’ When they told me, all of my senses started to go. My hands started tingling, and it was as if I was going deaf. I just couldn’t process it. None of it felt real.

“We were transferred to Robert Wood Johnson, Xander in a stretcher. I felt like I was having this out of body experience as all of this was happening. It all felt so surreal. They did his first surgery, an open biopsy, which confirmed it was stage III neuroblastoma. After he got out of surgery, he went into respiratory distress. It was terrifying. And as they were treating him, that’s when I noticed the clock said it was midnight. It was now his very first birthday. And I kept thinking, ‘This is it. He is going to die on his first birthday.’ It took almost 15 days until he finally pulled through and he was finally able to go home.

“They put him on multiple rounds of chemo, because his tumor was completely inoperable since it was wrapped around his heart. After his treatments were over, they did another scan…and the tumor still hadn’t shrunk. When all hope seemed lost, that’s when we met this incredibly gifted doctor from Sloan Kettering, Dr. Michael LaQuaglia. He told us, ‘I think I can help your son and remove the tumor.’ The night before the surgery, I said to the doctor, ‘Can you promise me my baby will be ok?’ He looked at me and said, ’No. This is a life-threatening surgery. But I do promise you we will do the best we can.’

“Eleven hours after the surgery started, he came out and said, ‘Your son is fine.’ I was so thankful. Xander has been cancer free since 2010. We call it ‘No evidence of disease.’ We consider him in remission. The surgeon was absolutely amazing. He was so gifted. And he takes the most difficult cases. He is such a famous surgeon for kids with tumors. We are so thankful for him.

“I later learned something very interesting…My mom was an identical twin who passed away just about a year before Xander was born, from a very rare cancer. It turned out that hers and Xander’s cancers were related, and we had no idea. They are both caused by the same mutative gene. Unfortunately, after much blood work and many tests, I found out I have the mutation as well, and I gave it to Xander. I was devastated. I felt so guilty… so responsible. I also gave it to Zachary. So Zachary has to be scanned every two years, but he has been healthy thankfully. Xander has to be scanned more often.

“I know I didn’t cause his cancer, but I can’t help feeling responsible. It is a terrible guilt, and it hasn’t gone away.”

(Meet Xander and Zachary in the first comment below)

~ Ocean Grove


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