Many are blessed to never hear that horrible phrase “I’m sorry your child has cancer." But for those of us who have heard it my heart goes out to all of you. On a Wednesday afternoon after I had just started my first week at my new job, my husband called me and said, “I have some bad news.” My heart began to sink. What now, I thought. We had already been through so much over the last two years; what more could there be? I should never have even thought that.
“Drew has cancer.” he choked out. All I could say was “I’m sorry” as I stood there listening to my six foot, two hundred pound husband cry uncontrollably. I was numb. What could I say? What did I feel? It was a dream to me. It wasn’t real. After only two years of marriage we already had been sued by my husband’s ex-wife twice for custody of their two boys. We had ended up in family counseling to help the judge make a decision to allow the mother to have standard visitation. During counseling my husband’s father and stepmother decided they needed to step in and ban my son from visiting their house ever again. They felt he was a bad influence on their two grandsons and decided to sue my husband, me and the boy’s mother for custody. It was a three-ring circus that had finally ended with our lives on the normal track again and a new half-sister for the boys.
During the custody battles, my husband and I had lost our jobs. We had just gotten new jobs after losing my previous job of three years and my husband was staying with the kids and had recently started working for a life insurance sales position. Things were starting to pick up and move in the right direction. How could this be? I went through the rest of my afternoon completely numb. I did not feel sadness, happiness or fear. There was just nothing. I went home to a red faced, swollen eyed husband who held me tighter than I thought was possible and it finally sunk in. My stepson has cancer. The child I had been more of a mother to than his own mother was about to go through the most horrifying experience a child can go through. I thought of all the books I had read growing up and the stories I had heard others tell. My heart stopped beating and tears poured from my eyes uncontrollably.
In mid-July of 2007I had seen a knot on Drew’s neck and asked him about it. He patted it and claimed it had no pain. I questioned him about being hit or bitten but he simply said no to all of them. Natalie his new stepsister of was due for her three month check-up so I made it a joint appointment. The doctor looked Natalie over and gave her the thumbs up. She was a picture of good health; he then moved to Drew. He felt his neck and frowned. “Do you have a cat or has he been around a cat recently?” “No we don’t have a cat, we have a dog.” I replied. He shook his head, “No, that’s not it.” Drew answered him “I’ve been around my grandma’s cat a few weeks ago.” The doctor felt Drew’s neck a second time and suddenly his demeanor changed. We were sent down the hall for blood work and to an ENT or ear, nose, and throat specialist.
In early September after an MRI, CAT scan, and biopsy the specialist decided it was a growing mass that had to come out. A week later family and friends joined us in the outpatient waiting center for what the doctor thought would be a small procedure. When the surgery began he made a small incision on the left side of Drew’s neck near his lymph node but soon discovered that the mass was much larger than first anticipated. He had to cut Drew from ear to ear to remove the fist-sized tumor that stretched across his neck. An hour after surgery began the doctor finally emerged with a tray. In it sat an odd heart shaped mass that had been pulled from his neck. He decided to send it to the lab because he did not like the look of it.
Now just a week later the test results were in and it was confirmed as cancer. We were scheduled for our first appointment the following Tuesday at St. Jude children’s research hospital for the first of a long string of appointments that would span the course of three years.
The doctors diagnosed him with a genetic form of cancer called Acute Synovial Sarcoma. It produces tumors in the head, neck, and chest area and is very aggressive. We were told that it would only be a matter of time before it returned. This particular tumor was one that he was born with and caused by a genetic mutation. This made us both alarmed. There was no way of knowing which side the gene came from. What if my husband’s other children had this same genetic mutation? That meant our newborn daughter and Drew’s natural brother could have the same mutation. This brought a whole new level of fear that we could not have imagined. What would we do? As luck would have it this was just an isolated mutation and the other children were not at risk.
On our first visit to St. Jude the doctor’s ran a series of test to determine if another surgery was needed. The ENT doctor had not cut a two-millimeter isolation barrier around the cancer and the doctors of St. Jude thought that it may be necessary. This second surgery would mean that part of Drew’s wind pipe would have to be removed. This meant a breathing tube would be placed in his trachea while he healed and went through chemo and radiation. We were sent home on Friday evening after three days of waiting for appointments, testing, and doctors. We were scheduled to return on Monday morning at six o’clock to review the test results and consult the doctors. After that first visit my husband and Drew’s brothers decided to shave their heads in support of Drew. It was a touching and painful moment.
It took two weeks’ worth of testing to decide whether or not another surgery was needed followed by chemo and radiation. In the end the doctor’s decided to forego the surgery and simply monitor him for any new developments. This meant that for the first three months, every two weeks, Drew had to get blood work, CAT scans, MRI’s and, x-rays of his head, neck, and chest area to look for any changes. Our hearts were raked over the coals every time. We were so afraid they would find another spot. The doctors had told us that this cancer was very aggressive and that it was usually not a matter of if it came back but when. This statement alone was enough to have us living in constant fear and anxiety. How would we handle another tumor? Would this one be worse than the first one? All these questions ran through our minds every test day.
Drew’s brother and step-brother had been jealous of all the attention Drew had been receiving over the last few months but after our visit to St. Jude the first time they suddenly changed. They met other children their age who were bald and sick from treatments. The reality that Drew may look just like they did in a few weeks scared them. It scared them even more when one of the girl patients they had played with was gone after only a week. They had just talked to her and played games and then she was gone. From that moment on they never complained and when they got hungry they would whisper to us so that the other children who were sick or fasting could not hear. Drew had to fast every time he went in for testing. Sometimes it would be three o’clock in the afternoon before he was able to get his first meal of the day after fasting from the night before.
We made it past the first three months of testing cancer free and graduated to being tested once every three months, then every six, and now once a year till he is eighteen. Each visit got a little easier. The first few were hard because we lost our home and had to move in the middle of the first three months. We were not sure if we would make it or if Drew would. Those first few visits we could hardly eat for fear the doctors would tell us a new spot had been found.
Time passed quickly and we had many ups and downs. We lost our home and everything we held dear only to discover that we had no memories there. Drew is now thirteen, and we have been very blessed in that he has been cancer free for the last five years. We have lived in an apartment the last four years and traveled nearly every weekend; determined to make the most of our time with our children and memories. Our priorities have changed drastically. Before the cancer our only memories had been of working Monday through Friday, yard work every weekend and sitting at home in a large house because our payments were such that a vacation was impossible. We realized that it’s just stuff and we can always get more stuff but we can never get our children’s youth or memories back so we decided from that moment on we would make certain that the memories we had were good because they may be the last one we have. Life is short and the world is an amazing place.
