Jake was admitted to the Children's Hospital of Philadelphia (CHOP) on April 3, 2011 after 10 days of having a fever.  He was originally diagnosed with severe pancreatitis and cholangitis.  After the first few days of admission, a PICC line was placed and approximately a week later, a biliary drain put in.  After several weeks of admission, Jake was running a 104.8 degree temperature, sometimes 4-5 times during the day for 1-2 weeks.  I have never been so scared.  I knew in my heart, that there was something else wrong.  We met with the surgeon who advised us that he felt Jake's bile ducts were malformed and that he would probably need surgery on his bile ducts.
 
During one of his many MRI scans to monitor his pancreatitis, one of the gastroenterologists came into the sedation room and advised that they wanted a better view and ordered a CT scan.  At that moment, my heart sank.  I knew something was wrong, I just didn't imagine what I was about to hear approximately a week later.  The gastroenterologist advised me later that day that a swollen lymph node was spotted by the radiologist and that a biopsy would need to be performed.
 
The surgeon came a day or two later and advised that preliminary results showed no tumor and that we would proceed with the bile duct surgery after the pancreas settled down.  Unfortunately that was not the case.  On May 13, 2011 I heard the words that no parent should hear -- that my baby has cancer. To be honest, after I heard those words I really couldn't tell you what else the oncologist said.  Jake was diagnosed with a rare form of lymphoma -- Stage III NK/T Cell Lymphoma.  He has tumors in his liver, lungs, a large one on his pancreas and left arm.  Unfortunately, there is little known about this type of cancer.  A lumbar puncture was immediately performed and a dose of methotrexate administered. 
 
Round 1 did not work so well for Jake, so for Round 2 he was given an adult dose of stronger chemotherapy meds which resulted in a bad case of mucositis, but fortunately showed some improvement in killing the tumors.  During our 13+ week stay at CHOP, Jake has had numerous biliary drain replacements/fixes, two PICC lines, a port placed, 3 lumbar punctures and two visits to the PICU. Through all of this, he still manages to give us smiles, giggles and the cutest laugh imaginable.  The courage and strength of all of these children facing this horrible disease is amazing.  Keep fighting Jake -- you're our family's hero and we love you very much!
 
Written by Phyllis Talbot, Jake's Mom
July 2011