John Eric's story begins with his birth on June 18, 2006. What a Father's Day present. What else could you ask for? He was born 2 months early at 32 weeks. He was healthy at birth, but spent 24 days in the NICU at Harbor Hospital. John Eric was what we like to call a feeder and a grower. Being 2 months early, he needed to learn how to suck, swallow and breathe all at the same time, and be able to maintain his body temperature without the aid of his isolete.

After 24 days, we were released from the hospital and came home with our precious baby boy. Life was great. John Eric continued to grow and develop normally. Other than the scheduled doctor visits for check-ups and for RSV shots, he was a healthy little boy.

It wasn't until John Eric was 14-months-old that our world was turned upside down. He had been constipated for a couple of days, which was very unusual. After several calls and visits to the pediatrician we were sent to Sinai Hospital in Baltimore for what our doctor believed to be a rectal impaction.

We arrived at the Sinai emergency room on September 7, 2007, a date that will forever be etched in my brain. We were seen right away and within the hour John Eric had x-rays and an ultrasound. It wasn't until Dr. Wiley and 2 of his associates came into our room and shut the door behind them that we realized something may be "wrong." After brief introductions, I don't think I even caught his name at that point, Dr. Wiley told us, "your son has a mass." Even at that point it still didn't register that John Eric might have cancer. I remember my wife saying, "a mass of what poop?" After all we were there thinking he was just blocked up, to which Dr. Wiley responded, "no, your son has a tumor."

We were at a loss for words, but not tears. A CT-scan had been ordered and surgery was to be scheduled for the following day in order to biopsy the tumor. Dr. Wiley told us that John Eric most likely had neuroblastoma. We were told that neuroblastoma is a cancer of the nervous system, is extremely aggressive and one of the childhood cancers that has the lowest survival rate. The CT-scan revealed that the tumor was approximately the size of an orange and was pressing on John Eric's rectum, bowels and kidneys, thus causing the constipation. The biopsy revealed that it was definitely neuroblastoma. Our family was devastated, but John Eric was a fighter. He didn't know that he had cancer. In the first 36 days we made it home for 1 1/2 days. The rest was spent at the most wonderful hospital you could ever hope to be in, The Children's Hospital at Sinai. It became our second home, and everyone there became a part of our family.

Over the course of his treatment, John Eric underwent aggressive chemotherapy, radiation, stem cell harvest, multiple blood transfusions, surgeries and a stem cell transplant. Through which John Eric just kept on smiling. He was such a happy, outgoing child and always had a smile on his face no matter what. John Eric was our Superman, a Superhero like none we'd ever seen before.

Endless hours were spent in treatment, waiting for treatment and discussing his next treatments. Even for a Superhero the side effects of cancer treatment are numerous and additional hospital stays were needed for fevers and infections.

Thirty days post stem cell transplant, at Johns Hopkins, a routine scan showed that another tumor had grown in John Eric's abdomen. Once again, surgery was scheduled. The tumor, the size of a large marble, was removed, but another tumor was found that had not shown up on the previous scan. This tumor, the size of a golf ball, was wrapped around the bowel and was inoperable.

After John Eric recovered from his surgery, and with the blessing of our oncology team, we took John Eric to Walt Disney World so that he could spend some time being a little boy again and not a patient. He had such a great time there, especially getting to meet all the characters. Except for his little bald head, no one would have ever known that he was sick. But once again, that was just John Eric. He always enjoyed life and spent it with a smile on his face.

Upon our return, we tried an experimental chemotherapy without success. The tumor that was the size of a golf ball only two weeks earlier was now the size of a grapefruit. It was then that we knew nothing else could be done to save him. John Eric had spent nearly half of his life in and out of hospitals.

We brought John Eric home under the care of the best hospice team you could ever ask for. With the help of our team from Sinai and hospice care we were able to keep John Eric comfortable and pain free for another month until he won his fight against cancer and earned his angel wings on May 16, 2008, surrounded by loved ones.

This is why we are here. You only get one childhood, and we hope to make the everyday lives of children battling this dreaded disease as normal as possible.

For more information, please visit www.thejebfoundation.com  

Written by Jay Bartels, John Eric’s Daddy
Posted: 02/09