NOTE FROM THE MACS STAFF

Jonathan's story has NOT been updated yet since he passed away on December 16th, 2000. We will update the end of his story as soon as we receive more information from his family.

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Jonathan's Story
written by mom Rhonda

Jonathan was born on April 26th, 1996. He was a very easy baby and, as a third child, quickly melded into the family. As a baby, he spent his time watching and learning from his sisters.

On March 1st, 1998 we noticed a lump on Jonathan's head while washing his hair. We took him to an after-hours and the doctor noted the lump on his head and also felt an abnormality in his abdomen. He recommended that we take Jonathan to his pediatrician the next day. Our pediatrician also noted the lumps and ordered a variety of tests --- blood work, urine test, CAT scan, bone scan, x-rays, etc. We were not particularly worried or alarmed. The week quickly became a blur --- one test after another. Everyone looking at us but no one divulging any information. I was starting to become scared and angry.

At one point we were in an office and I was reading the names on the door --- doctor so-and-so, Oncologist. I knew if we could figure out what "oncology" meant we'd have a clue as to what was wrong. Five days later, on March 6th, 1998, Jonathan was diagnosed with Stage 4 Neuroblastoma. He was 22 months old. A large tumor was found on his adrenal gland and the disease had already spread to his head and his bone marrow.

We quickly entered an aggressive treatment protocol. Jonathan had a port surgically placed in his chest so that meds could be easily given and he endured 4 rounds of chemotherapy. His abdominal tumor was then surgically removed. My husband and I asked to see the tumor. The pathologist thought we were weird but we held it, stared at it, felt it, etc. It looked like a baked potato and felt like a plum. It was hard to believe that the large mass we were holding was inside our baby and could be so devastating. He then completed 2 more rounds of chemotherapy, some spot radiation, and a Bone Marrow Transplant. In general, he tolerated the chemotherapy well. He experienced minor nausea and vomiting and we often had to return to the hospital for red blood cell and/or platelet transfusions.

The transplant, however, was a difficult time for the whole family. Because the girls were not allowed to visit Jonathan, he missed his two sisters dearly and they missed their baby brother. Mom and Dad tag-teamed the long hospital stay and also missed being a family. But Jonathan kept our spirits high. When we told him it was time to go back to the "doc," he never complained. He just packed his bag --- blanket, stuffed animals, toys, videos, and lots of snacks. For two years, he avoided hospital gowns and hospital food!

After the transplant, Jonathan had a full battery of tests and we got our great news right after Christmas --- January 1999 --- Jonathan was in REMISSION!! We were thrilled but grounded in reality. We knew there was a very good chance his cancer would return. But we lived for the present. We resumed our normal activities and tried to appreciate the little things in life.

In June of 99, though, our worst fears were confirmed. Jonathan's cancer had returned. The doctors estimated his chances of long-term survival to be less than 5%. We frantically began to research treatment options. We learned there were very few to choose from. We decided on an experimental treatment protocol at Memorial Sloan Kettering Cancer Center in New York City. We live five states away! For the past year, we have flown back and forth to New York City every other month for his cancer treatments.

In September 2000, during routine tests however, we learned that the treatment is not working. Sadly, there are no other treatment options. Jonathan is currently home on hospice care. He is a courageous little boy who fought his disease the best he could --- with hugs, smiles, and little fear. Before his time comes, I want him to know that he has made a difference in the lives of many and that he is loved by all. Thank you for allowing us to share our story.