Sunday, November 27, 2011

November 27, 1995

Fifteen years ago today, my world changed forever.

It was mid morning and 15 month old Nick was scheduled to meet with his new pediatrician for the very first time. Six months earlier, Keith and I had moved our young family to the Huntsville area. Nick's other baby checkups were done with me driving the hour to continue seeing our pediatrician "back home". On this day, we were taking steps to make Huntsville our home.

Nana came with me to Nick's checkup, the same way she had done since Nick's birth. Keith was working that day. Every checkup Nick had ever had was perfectly normal. Why would this visit be any different?

We met with our new pediatrician and completely fell in love with her. She was an amazing doctor. She thoroughly examined my sweet boy. She kept me calm, even when sweet baby Nick was screaming. As she is examining Nick, I mentioned this strange little knot that I found in Nick's tummy. As I was mentioning the knot, she found another similar knot a few inches away from the one I found.

After several questions and some more examining, the doctor decided it was necessary to send Nick for some chest and abdominal x-rays. At that time, HIPPA was not in effect. Technicians and radiologists talked to you, the frightened parent, more freely than they are allowed to do now. I was asked if we had been in a car accident. I answered no. Had Nick fallen and hit his abdomen on the edge of something like a table or the edge of a step? No. Was I certain that Nick had not suffered some kind of trauma to his abdomen? Yes I was certain. Nick had not been out of my sight.

I then asked, "What is going on?" "Is something wrong with my baby?"

The answer I was given was that it appeared that Nick had a lacerated liver. What on earth was that?! I hadn't ever heard of anything like that.

Next, we were sent for an abdominal ultrasound. The doctor wanted a different look at whatever was going on inside Nick's little body.

Then we were sent for what would be the first of a lifetime of CT scans. At that point, I called Keith from the hospital. CT scan technology wasn't widely available yet. The hospital was the only place to go for one.

The scans seemed to take forever. Nick got sick and vomited the red contrast all over me. I was no longer calm. It was mid afternoon by this point. Nick had not been allowed to have anything to eat or drink. I couldn't eat or drink. I was crying. Nick was crying. Nana had her hands full. When Keith was finally able to get to the hospital, I felt like my world was being torn into a million pieces.

Little did I know what was yet to come.

Once the CT scans were finished, we were sent home with instructions to let Nick eat and drink. The doctor would call us as soon as the results of the scans were in.

Nick and I headed home. Nana began her hour long journey home. Keith went back to work.

Finally, Keith was home from work. Nick seemed fine. We were on pins and needles. The phone rang. The call we had been waiting on for what seemed like hours and days and hours and days.

Our brand new, first visit, pediatrician told us that four fist sized tumors were taking up lots of space in Nick's liver and abdomen. We needed to have Nick at Children's Hospital in Birmingham at 9:00 the following morning to meet with an oncologist.

Wait a minute...I recognized some words I had heard before: tumor and oncologist. My grandmother had breast cancer when I was 12. I remember hearing words like that in reference to cancer. Dear God! This doctor thought my sweet baby had cancer! This could not be right!

Keith and I made phone calls to his parents and my parents. We held onto each other and our sweet baby. We pretended we weren't scared and worried.

Keith's parents arrived early the next morning to drive us to Birmingham. My mom, dad, brother, and sister began the 8 hour drive from Arkansas to meet us in Birmingham.

We met with the oncologist for what would be the first of many, many visits. The initial thoughts were that these tumors were a benign (noncancerous) condition that happens sometimes when a baby's body doesn't stop making a certain protein after he's born. We still needed to meet with a surgeon to discuss taking the tumors out.

Ok. Whew! We could handle that.

I remember walking into the waiting room and seeing my dad, mom, and family sitting there. They had arrived while we were with the oncologist. I said to them, "They don't think it's cancer."

Funny how some things just stay with you for years and years. I remember seeing my strong, never show emotion daddy tear up.

We met with the surgeon and didn't like him. He had no bedside manner. However, we were assured that he was the BEST surgeon around.

We scheduled the surgery for December 5, Keith's birthday. Another of what would become only the first of many challenges to keep special days...special.

The world changed once we arrived at the hospital for Nick's surgery. Some extra tests had been done during the days since our clinic visits. The surgery to remove the tumors had changed to surgery to take tissue samples. There was a strong indication from one of the tests that the tumors were actually a very rare cancer.

Keith and I were shell shocked. The grandparents were shell shocked.

We went from being a young family who was so very naive, to parents who were being told their 15 month old baby had an incurable cancer that was so rare only 1 in a million children had it. There weren't many, if any, survivors of this cancer either. It was just too aggressive.

That is some of what I remember from the journey that began sixteen years ago today. There is still more to the story, but I'm tired of reliving it tonight. We all know what the end result was, since Nick is still here.

I've told this story before. I've written it before. I may have even shared it here before. I didn't look at the archives to see. I just know that it's on my mind tonight, and I needed to share it. I needed to write it once again. I need to come to terms with the life changing events that took place in what seems like a lifetime ago.

I needed to remember that we were as much in HIS Grip then, as we are now.

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