.

Our Story

 

Our journey began the end of September 2009. 

 

Daxton had just finished his latest set of vaccinations and a flu shot when he developed a low grade fever.  Nothing to really worry about since that is expected.  But the fever was persistent and would fluctuate never getting really high, just persistent.  Heather took Dax in to see the Pediatrician concerned that maybe something else might be going on.  After the Doctors exam it seemed that nothing was wrong, the fever might just be his body fighting off a viral infection of some sort that would go away in a few days.  That didn't happen.  Dax's fever persisted and his usual sunny smiling disposition started to change.  He was not as interested in food as he had been, wanted to be held all the time and wasn't sleeping as he once had.  Again Heather took him to the Pediatrician concerned about these changes and again she was told that nothing was wrong that they could determine and so home they went.  Dax's daily routine seemed to change even more and the fever was still there.  He was only napping in 30 minute intervals, if at all and was refusing food only wanting to nurse, but not long enough to fill him up.  He wasn't sleeping at night either.  It would take many hours of walking and swaying and finally he would fall to sleep exhausted -but for only a few minutes.  Dax, Mom, Dad were exhausted and worried. We took him back to the Pediatrician for a third time in a week and this time they referred us to Sarasota Memorial Hospital for some extensive blood work and x-rays, this was Wednesday Sept. 30th.  They did a blood test, took a chest x-ray and did an ultrasound of his testicles since one was swollen.  After several long hours the diagnosis that we left the hospital with was epididymitis, although never seen in babies - we hoped that this was the answer to his obvious discomfort and the fever.  The ER doctor did tell us that some of Dax's blood levels were a little off, but was hoping that it was due to the infection.  Dax was prescribed an antibiotic and off we went.  We started Dax on the required dose and then he received another to get the medicine into his system, we were told that we should see a significant difference in him within 24-36 hrs.  36 hours and 5 doses of antibiotic later and if anything things were getting worse not better.   On Friday Oct 2nd the ER doctor from Sarasota called us concerned about Dax and wanted to know how he was doing, when we told him that nothing was better we were told to bring him back in as soon as possible, they wanted to do more testing.  This time they ran another blood test to compare the prior levels to his current levels and nothing had changed.  On several of the visits to the Pediatrician and to the ER we commented on Dax's belly.  He seemed bloated and hard.  This visit they paid attention and did an x-ray of his belly area.  It showed air that was pushed to the right side so next they did a CT scan of this left side.  It was then that our whole world exploded - we were told that Dax had a softball size tumor in his abdomen.  We were briefed on what the possibilities could be and were told that they had already made a call to All Children's Hospital in St. Pete and that they would be expecting us.  We went home, tried to digest what we were just told and stay calm.  We  packed a bag and headed to ACH - we arrived at midnight to the 7th floor.  On October 2nd Daxton was diagnosed with Stage IV Neuroblastoma, a rare yet common form of childhood cancer.  We were crushed....