On October 1st 2009, Xander had tubes put in his ears like many young children.

The surgery went extremely well. The next day, he woke up from his afternoon nap screaming like I had never heard before. Thinking that there was something wrong with his ears, I rushed him to the ENT. I was disappointed when they told me that his ears and tubes were perfectly fine. When I came home with him, my husband Matt was home and I told him that I did not like the way he was acting so I took him to the Emergency Room. There he was happy and smiling at all the nurses (I’m pretty sure they thought I was a crazy mom!). They agreed to do a belly x-ray which was negative. After the x-ray, he had another screaming fit and the doctors and nurses agreed that there was something wrong. They thought it was intussusceptions, so they did an ultra-sound. While he was getting the ultra-sound he was having another screaming episode. The ultra-sound was negative for intussusception.
 
We were admitted overnight for observation. When we go up to our room, Xander had a very big poppy diaper and the doctors thought that maybe he was getting a stomach virus. He was fine for the remainder of the night. The next day was Saturday and we were released. He was fine all day. Sunday was the birthday party for Xander and his big brother, and he was fine all day again. Monday, he was fine all day until 10pm. He woke up from sleeping and was having another screaming fit and this time he vomited as well. I knew something was very wrong. I was able to finally get him to bed. The next morning, I spoke to his pediatrician and we agreed that it sounded like they missed the intussusception and another ultra-sound was ordered.
 
I took him for the ultra-sound and the technician and radiologist said that they suspected he did indeed have intussusception. I was told to go home and pack a bag for the hospital and that Xander was going to have a barium enema done. If that did not correct the intussusception, then surgery was needed to correct it. He underwent the barium enema and the pediatric radiologist who preformed it said "well, he doesn't have intussusception now." I was excited, but then realized that she never saw it. She wanted to do another ultra-sound to make sure whatever they saw earlier in the day was not there anymore. It was with this ultra-sound that they found a very large mass in my son's abdomen. A CT was immediately ordered and confirmed the mass. No more then a few minutes later my cell phone rang and it was our pediatrician and she said "Katie, I want you to hear this from me, there is a mass in Xander's stomach and it looks like it is either lymphoma or neuroblastoma." As a mom, all I heard was OMA and I started to go numb, my eyes started to burn with tears and my ears stopped working. I told her that I had to call her back and gather my thoughts. Thank goodness Matt was there with me. I gathered myself and called her back and asked what I already knew "is it cancer?" She said yes, that’s what the doctors think.
 
The next day was October 7, 2009 and was Zachary's actual birthday. We were transferred to Robert Wood Children’s Hospital and got settled there. The following day Xander had an open biopsy, double bone marrow biopsy, insertion of his central line and they removed his appendix. That night I didn't think he would make it through the night, his oxygen level was going dangerously low and he went into repository distress. Thank goodness he made it through and recovered beautifully.
 
Confirmation: NEUROBLASTOMA, STAGE 3, INTERMEDIATE RISK, FAVORABLE HISTOLOGY.
 
The tumor was wrapped around his aorta, inferior vena cava, mesenteric and renal arteries. It was deemed inoperable. It was too dangerous to remove.
 
We completed two rounds of chemotherapy and were hoping that he would be cancer free after that. Unfortunately, the chemo did not shrink the tumor at all. We were devastated. We then opted to go for the BIG surgery at Memorial Sloan Kettering Cancer Hospital with Dr. LaQuaglia. The surgery was preformed on January 11, 2010 and lasted about 11 hours. Xander did so well, he was expected to be in the hospital for 14 days and made it out in 5! He was supposed to be on a respirator for 3 days and came off right after surgery. He blew away everyone's expectations! It turns out that Xander has a very rare mutated gene, SDHB, and all the doctors are confident that this mutation directly caused his neuroblastoma. Unfortunately, I have the mutation as does Zachary. Doctors have been looking for this mutation for years and years in neuroblastoma. This is the first time they have been able to link it. He is making medical history. He is a warrior in every sense of the word and was put on this earth for a reason.
 
Written by Katie Denberg, Xander’s Mom
07/10