"I thought it was Appendicitis"

Written by Debbie, whose son Sammy had Non-Hodgkin's Lymphoma.

Our son Sammy was diagnosed with Non-Hodgkin's Lymphoma on November 8, 1999, a day that changed our lives forever. It all started with a pain on Sam's right side, which I thought was probably appendicitis. He also had a lingering cough causing the pediatrician to think Sam might have pneumonia.

The pediatrician's exam showed some but not all symptoms of appendicitis, so more tests were ordered. A chest x-ray showed a 16 cm tumor —about the size of an elongated football. A CT scan showed three more tumors on Sam's right kidney.

Needless to say, the shock of hearing the word CANCER was like a living nightmare. Sam was transported from Rochester General Hospital to Golisano Children's Hospital PICU (Pediatric Intensive Care Unit). Leaving him in the hospital that night was the most difficult thing we had to do. We went home, cried ourselves to sleep, and prayed the doctors were wrong.

The next day in the hospital, Sam endured a bone marrow biopsy, a kidney biopsy and had a PICC line inserted into his arm. He had emergency radiation for the tumor in his chest because it was constricting his trachea and slowly cutting off his oxygen. The radiation oncologist told Sam that he had cancer.

Sam said, "You mean, I'm the first one in my family to have cancer?"
We had to sadly say, "Yes, Sam."
What a dubious honor…

We spent the next few weeks trying to understand the chemotherapy protocols and encouraging Sam to keep a positive attitude. After a few weeks, his hair fell out, and with characteristic humor he told the kids at school that his bald head was his "new" haircut.

Sam with his brother and sister

Things slowly started to return to "normal" and life was good again, until the doctor told us Sam's cancer had returned while on chemo. He would need a bone marrow transplant – two, actually. The first was an autologous transplant using his own stem cells after the cancer had been eradicated from his system by aggressive chemotherapy. The second was from his big brother, Joe. Joe was a 5/6 match, equivalent to a perfect match from an unrelated donor.

Following his transplants, Sam was neutropenic (no white blood counts) making his throat so sore, he couldn't even swallow his own saliva. He also had graft vs. host disease because the two bone marrows were fighting with each other. Just like Sam and Joe fought when they were younger!

He finally came home after 10 weeks in the hospital, but because of multiple complications went back and forth between home and the hospital. He was only home for 3–4 days at a time. On December 11, 2000, the doctor told us that Sam's cancer had once again returned, despite the chemo and bone marrow transplants. It had metastasized to his lungs and liver and there was nothing more they could do. When we told Sam his cancer was back again, he cried and just wanted to go home which we did on December 14th.

Sam passed away peacefully at home on December 22, 2000 with all of us around him.

Despite her loss, Debbie offers these helpful hints to other parents:

"What helped me tremendously was keeping a daily journal. I kept track of tests, meds, and how Sam was during that day. It also helped when people brought meals in because I was never home to cook. Fortunately, our two other children were older and in college, but living at home, and they could take care of themselves."

Please feel free to visit Sam's website.