Getting Started

So, I always wanted to create a blog. In fact over the last four years I have thought about putting my thoughts out there...and I did...but not in this format.

Over the last four years I have shared my son's story with family and friends as he went through diagnosis, treatment, remission, life, another diagnoses, more treatment, and (Thank God) remission.

There is nothing light about his story. In fact it is excrutiatingly alive, painful, beautiful, sad, poignant, and miraculous.

Four years ago our 15 year old son, Steven was diagnosed with Stage Four Osteosarcoma. He had a softball sized tumor in the L (lumbar) 4 region of his spine. The tumor had grown out of his spine and around his sciatic nerve (which was when the pain and cancer revealed itself to him). His pain was excrutiating and he was unable to sit in one spot. In fact he missed about two to three weeks of high school while being unsuccessfully treated with pain medicines and physical therapy (which didn't work!).
During the "waiting period" with pain meds and physial therapy that Aweful tumor was growing in his body and the cells from the tumor metasized into his lungs. To be more precise he had around 30-40 cancer cells in his lungs, plus bloodclots. When we were informed of the nature of his cancer, we were completely overwhelmed and shocked. Our world came to a complete halt. Osteosarcoma? Wasn't that the disease that Ted Kennedy's son had? Don't people die from Osteosarcoma? Didn't I have a cousin that died of that disease? My dad and grandfather died from lung cancer, is there a relationship?
This couldn't be happening to my son!
Our little baby had been diagnosed with a horrendous disease. All we could think about was "were we going to loose our son?" We were beside ourselves.
As we sat in our son's hospital room, my husband Harry and I took turns running into the bathroom to cry and agonize, then throw water on our face, and return to Steven's side with a "calm" expression (joke). As we alternated running to the bathroom, Steven's oncologist would appear and reappear with information and a plan of action. Nurses would enter to ask questions. Residents would enter to ask questions while they examined Steven. Everyone had serious yet friendly expression. We looked into their eyes for answers. I just wanted someone to say to me that our son we would be okay. No one would. They just kept saying they would do everything in their power to help our son. Although I didn't find a great deal of comfort in that, Steven did. (Later, I found that leap of faith on the part of a 15 year old very heartening.)

Although we were impressed with our oncologists knowledge and professionalism, we were unable to truely appreciate it until later. At that moment in time, we were too shocked to appreciate much of anything. Fortunately the care Steve received was first rate, we were confident in our physicians and the hospital we had selected for our son's treatment. (Rainbow Babies and Children's Hospital of Cleveland).

Those first few days were filled with Steven being biopsied, radiated to shrink the painful tumor enough for him to be comfortable, and then drugged with pain meds. During those first few days he had a mediport installed into his chest. (Oh my God, my baby had a port for chemotherepy in his chest!)
All I could think about was the Star Trek episode where unwilling prisoners were be implanted by the Borg. My son now had plastic and metal protruding from his chest just like Borg drone!

The upside of that mediport was that Steven's pain meds could be injected into the port for immediate gratification. Which, as difficult it was to see him medicated with morphine, was a relief to see him relax. A catch-22, if you know what I mean.

During this time I met our assigned clinical nurse practitioner, Barb. Such a wonderful person. Although I really didn't know she was wonderful at the time. All I could remember of our initial meeting was the review of the "family information folder"and the everlasting statement she made to me that will forever ring in my ears: "From this day forward, your life will never be the same." (All I could think of at that time was "but I don't want my life to change, I like my life.")

So, within 30 hours of our son's initial diagnoses of cancer, we knew the type of cancer, the level of severity (very severe and life threatening), that he was eligible for Make-A-Wish, that he would be hospitalized during chemotherapy treatments for 5 - 7 days at a time for the next 10 months, probably have spine surgery, would have radiation, and God Willing at the end of treatment would be cancer free. And oh by the way, he had 20-30 % chance of survival.

So, the day after his initial diagnoses, I called my employer and quit my job. Thank God my husband's employment situation permitted me to do so.
Our journey into the world of cancer had begun. We were now members of a new elite membership. Not a membership that one seeks out, but once a member always a member. Parents of a child with cancer.