Our world was turned upside down on September 20, 2006, though it had been turning for six months prior. Our son Daniel was 2-years-old when he started to get really sick. He would throw up daily, and the doctors didn’t know what was wrong. We saw countless specialists with no luck. Daniel’s episodes were getting worse - he would throw up and almost pass out - and we were getting no answers. Finally on the 20th of September. Daniel began holding on to the walls in order to walk. I called his pediatrician and made an appointment for that afternoon.

When we got to the doctor, they checked him out and noticed that his eyes were moving to the sides. By 4PM we had a room at Phoenix Children’s. They were not going to do anything until the next day, but around 8PM he threw up and almost passed out. Luckily there was a nurse in the room to see it, and by midnight we had our first CT Scan. In the early hours of the next day, they woke me to give me the worst news any parent could ever receive. They told me that my little boy had a mass in his head & they were going to move him into the ICU. By 10AM we had a room in the ICU. At 4PM, Daniel had an MRI and we were told he had a 50/50 chance. By 8PM the neurosurgeon called to tell me that he was going to have to take back that 50/50 chance, the tumor was blending in with the brain so this would make the surgery a lot more difficult than he had planned.

The next morning was the worst, our son was up and playing around, having fun with the visitors, but at the same time he was hours away from having a life threatening surgery. We were told the most heartbreaking thing just before they took him away, the surgeon told me to make sure & say goodbye. This was the hardest thing I had heard since we were admitted. This made it very clear that I wasn’t dreaming, and that the chance of losing my son was greater than any of us had expected. Rolling our baby into the operating room was devastating; knowing that you may never see him again was unbearable. To hear him say “bye mommy, bye daddy” and wave as they took him was an inexplicable pain. Surgery was 4.5 hours, and it was a success. They had removed an egg-sized tumor from Daniel, which was 95% of the tumor. However, we weren’t done with the bad news & heartache.

Waiting for the results of the pathology were as bad as everything else we had gone through. It took a long 7 days to get the results, and they weren’t good. It was a malignant tumor, and now Daniel would have to go through chemotherapy and radiation. If that wasn’t bad enough, his chances of surviving the treatment were 50/50. By October 13, 2006, he had started his course of chemotherapy, and we continued the treatment at home. We had to give him shots to keep his counts up and we had to learn how to place a feeding tube. We also had to teach him how to walk all over again. Chemotherapy ended in December of 2006, and we started radiation that same month. Daniel would have 33 sessions of radiation, ending in February of 2007. By then he could walk, and was doing great. They kept an eye on him and did routine scans to watch the tumor. Everything was looking good.

On January 9, 2009 we went in for a routine MRI in the morning. That same Friday we received a call in the afternoon that there was a change in his scan. We met with the doctors the following Tuesday and they prepared everything for a second surgery. The mass had grown so large in such a short time (3 months). Little by little Daniel started to deteriorate, and by the date of surgery my son was no longer walking (due to the pressure & position of the mass). His surgery was January 23, 2009 with an early check-in for an MRI, followed by the surgery that started at 9AM & ended at 12:30PM. This was also the last day I saw my son’s smile. The surgery was a success, and this time they had removed the entire mass (we were told by the neurosurgeon that it was the size of a small orange), but a few hours after surgery we noticed something was wrong. During surgery he was hurt, and now has a weakness to the right side of his body, he has a facial palsy to that side. We didn't mind the outcome since it was a small price to pay to have our son with us. We would just keep an eye on him again.

On March 10, 2009 he had another MRI, again that dreadful call - there was a change again. We met with the doctors, this time they have 2 options for us. Another surgery is not an option. They offered us an experiment. The intent is not to find a cure but to see how much of a particular medicine a child like him can tolerate. It isn't chemotherapy; it's a protein inhibitor, which they hope will target the protein that feeds the tumor. If while on "treatment" there is another change he will be taken off. The other option is that we do nothing and simply wait. We didn't accept anything that day; we contacted 2 other doctors, one at Duke & the other at St. Joe’s. The doctor at Duke suggested another treatment, which would consist of chemotherapy (also with no guarantee) and the doctors at St. Joe’s agreed with our doctors at Phoenix Children's. We ended up taking the experiment. This will be treatment daily for a whole week, every other week.

Website: http://www.caringbridge.org/visit/littledan

Written by Brenda Martinez-Hernandez, Daniel’s Mother
10/09

Sadly, Daniel passed away on March 22nd 2012.