Sam taught us all about strength. The strength that comes from within. He was very brave and courageous to fight his battle with cancer because he wanted to live. He NEVER gave up and neither did we.
On November 8, 1999 the day our lives were forever changed, Sam came home from school with stomach pains. I took him to the emergency department at Rochester General Hospital thinking he may have had appendicitis. After numerouse tests, the doctor pulled me outside of the room and told me that Sam had one of the five T's. I silently prayed that he didn't mean a tumor. He did mean a tumor. In fact, sam had two tumors. One was located in this chest that was 16 cm or the size of an elongated football the other tumor was on his right kidney the size of a softball.
Sam was transferred by ambulance to Strong Memorial Hospital. We could not believe the x-rays and CT scans that we were seeing. We weren't really sure what we were looking at until we could see a normal x-ray to compare. We were hoping and praying that the doctors were making a mistake. Unfortunately, they were not making a mistake. Sam had cancer.
After a bone marrow biopsy and kidney biopsy, Sam was diagnosed with non-Hodgkins lymphoma, Stage III. It was a word I had never heard before. I knew Hodgkins was more treatable, but Sam had an 80% chance of survival. His diagnosis was non-Hodgkins lymphoma, large cell, type B.
It was so difficult for us to leave Sam in the hospital that night. We left him at 1:30 a.m. in the intensive care unit and it was the most difficult thing we ever had to do in our lives.
We went home to bed and cried, and had difficulty telling Sam the next day.
The next day Sam had numerous tests done. He was starving because he hadn't eaten since lunch the day before but he couldn't eat yet.
Sam had a bone marrow biopsy done. Normally, they would give the patient medicine to go to sleep so you don't feel anything. In Sam's case, because of the size of the tumor and the pressure on his trachea, he could not be given anything. His test had to be done while he was awake. The doctor had to go into his hip bone through Sam's back. They literally break the bone and go into the marrow and aspirate. They did give Sam medicine to numb the skin but they can't numb the bone. It seemed barbaric to hold him and listen to him scream. Another test was the kidney biopsy. This too was painful for him.
Later that day, radiation was done on the tumor in his chest and the radiologist told him if he ever heard of cancer. Sam said yes and he said, "I'm the first one in the family to have cancer?" We told him yes.
Sam finally ate a peanut butter and jelly sandwich about 4:00 p.m. He was starving by that time.
Sam was hospitalized for about ten days to two weeks while receiving chemo. He was released from the hospital and went to the outpatient clinic at the hospital for his treatments. Every 21 days, he would get adriamycin and vincristine and spinal taps at various times. He had so many pills that he had to take and he knew what every one of those pills were for.
Things were settling back into a routine again and we thought that we could take a deep breathe. However, the air was sucked right out of us again when Sam relapsed in April 2000. Dr. Duerst told us he would need a bone marrow transplant.
Andrea and Joe were tested to see if either one would be a match. Joe was the closest match. He was a 5/6 which is equivalent to a 6/6 unrelated donor. Joe also had the same blood type, O positive so we were counting our blessings each day for small miracles.
Sam had chemo in the hospital before the transplant to try and shrink the tumors as much as possible to have a better chance of the transplant working. Most of Sam's summer of 2000 was in the hospital. I remember it was a lousy summer and I told him he wasn't missing much anyway. Sam loved being outside all of the time; rain or shine.
The first transplant was July 24, 2000. It was an autologous transplant using his own stem cells. All the chemo had depleted his immune system so this first transplant is to replace what was lost.
The second transplant, an allogeniac, was from his big brother Joe. Same procedure of being infused through his broviac. A few days later, Sam developed double pneumonia and went into pediatric intensive care on a ventilator. He remained that way for one week. At that point, the doctors gave us little hope. They said a transplant patient on a ventilator is usually their last stop. We went to the chapel and prayed to God. We gave Sam back to God at that point. Sam would not want to be on a ventilator for the rest of his life.
Miraculously, Sam recovered and left intensive care after two weeks. He went back to the bone marrow unit where he started developing graft vs. host disease. GVH is caused by the two immune systems fighting with each other. Sam's GVH attacked his gut and he uncontrollable diarrhea for three weeks at intervals of every 30-60 minutes. It destroyed the lining of intenstines and the colon but that did heal itself in time.
The good news was that the GVH was also attacking any residual cancer cells. On October 11, 2000, we received wonderful news that the tumor in his chest had shrunk 50% and the tumors on his kidney were almost gone. We were all so happy that Sam was going to be well again.
Our hopes were shattered on December 11, 2000. Exactly two months later we were told that Sam's cancer had spread. It had metastasized to his liver and his lungs. We could not believe what we were hearing.
We were told that Sam had weeks to live. We took him home on December 14, 2000 and he had a few good days. He finished building a model that he was working on and had visitors.
On December 20th in the evening, Sam had difficulty breathing. He developed a fever and we tried to keep him comfortable.
Thursday morning, 12/21/00 he struggled with breathing. He was only getting 80% oxygen saturation and we knew he was leaving us. He continued to have difficulty breathing and he had oxygen to make him more comfortable. He also had morphine every 5 minutes so he wouldn't have any more pain.
We asked God to be merciful and to take him if he was going to take him.
Sam passed away peacefully at home at 4:00 a.m. with his mom, dad, sister and brother around him telling him that we loved him and it was okay to go. He had fought a hard battle and we were proud of him.
The only lights were the twinkling of the Christmas tree.