General Non-Fiction posted March 8, 2016

This work has reached the exceptional level
Having a positive attitude in the face of adversity.

When Life Gives You Lemons

by Stephanie Kastner

When my husband, Steve, and I were on our honeymoon in Maui, we rented a jeep so we could make the trip all the way around the island. You needed a vehicle with four wheel drive capability in order to do so. We got to see some of the prettiest parts of the island making that decision, and never regretted spending the extra money.

Sixteen years later, on this trip we all call life, with the maneuverability of four wheel drive, we had already overcome some challenging terrain. In the words of Rascal Flatts, "Life's like a road that you travel on, when there's one day here and the next day gone." Our marriage was strong, and we managed to get through the difficult times by leaning on each other. We'd been cruising for a while, driving in the fast lane like so many others, busy raising our family and totally unaware we were about to find ourselves right smack in the middle of a lemon grove.

The day our life took a detour started out pretty typical. I fed the dogs and let them out, and then fought to get the kids up and running. The only one up early that morning was Henry, ready to prod the other two because he didn't have to go to school that day. I was sure he'd be rubbing it in. He was scheduled for a procedure that had been described to us as fairly routine. Sure enough, as the other two ate their breakfast, Henry told them he'd be watching Sponge Bob and eating ice cream later when they'd be doing Math and Science. Of course there were some complaints from his sister and his brother that caused some delays in us getting out of the house, but somehow, we got them to school on time and made it to Children's Hospital in time for Henry's appointment.

The doctor met us in Pre-Op before Henry went under to make sure we didn't have any questions or concerns. We had confidence in his ability, so there didn't seem to be any cause for concern. But sitting in the waiting room an hour later, the fear was gripping. I couldn't even tell you why I felt as anxious as I did. The doctor wasn't worried. He had felt the growth was benign. There had never even been any mention otherwise.

As I sat there watching the board with Henry's number, I saw another family wearing matching purple t-shirts. Their daughter had a rare disease, and surgery was her only option. I was amazed at their strength and grace. I didn't understand how they could be so poised. Their daughter had been in surgery for hours already. My son hadn't even been in for an hour, and I was going out of my mind with worry. I remember talking to the mother. I asked about the t-shirts, and she explained what they meant. Talking to her calmed me.

Steve was sitting next to me, but when he worries, he keeps to himself. I know he had the same fears I did. When your loved one is put under, you can't help thinking of the possibilities, especially when that loved one is your child. You have to sign paperwork that tells you what could happen. But in my heart, I had to know Henry would be okay.

When the nurse called our name, my heart sank to my stomach. The doctor wanted to see us, and that hadn't happened to many other people who were waiting. We were led to a private room down the hall. It took a couple of minutes for the doctor to arrive, and all I could think was, what is it? My heart was thumping so hard against my chest that I was sure Steve could hear it. He grabbed my hand.

When the doctor walked in, we both looked up. Right away, I could see it in his eyes. Something was wrong. He started by saying, "Henry's out of surgery, and you'll be able to see him soon."

I let out a breath of air.

Then he went on. "It wasn't what we expected. As soon as I cut in, something looked peculiar. So I sent it off for a frozen biopsy."

Steve and I looked at each other.

"Initial results are inconclusive, but suggest it could be Leukemia or Lymphoma."

"You think our son has cancer?" I questioned.

He was careful to say the results were inconclusive. "Further testing is being done, and I will call you as soon as I know. Try not to worry."

How do you not worry?

"Henry's blood counts are good," the doctor said. "And while we waited for the biopsy, we checked for any more lumps or bumps, and didn't find any. If he has cancer, I am fairly certain we are catching it early."

The growth was on his head which was covered in this beautiful mound of dark curls. The nurses loved his hair and had been careful not to shave too much. But it was only hair. It would grow back.

I have since learned to be thankful for that bump on his head.

We were allowed to take Henry home that day, and didn't mention what the doctor had said. There was no reason to worry anyone else until we knew for sure. He wasn't feeling well from the anesthesia, and slept most of the day away. Steve and I took turns laying with him. I think we both needed to be close to him.

That night, we got the call we had been dreading. It was conclusive, and even though we'd been warned, we were in shock. Everything about our lives was about to change. It was a Friday night, and we learned that Henry would be admitted to the hospital on Monday. We only had the weekend to prepare.

We had to tell our children, which was the hardest thing to do. How do you tell your eight year old he's about to embark on the battle of his life? You don't. You tell him what the doctor said, that he has cancer, and it is treatable and curable, words I would hold onto. We were honest. But he was only eight. He didn't need to worry. We could do that for him. Our other children are older than Henry and understood a little more. There were many tears that night, but none of them from Henry.

Then we called other members of our family. We would need support. We had two other children who needed us, and one of us would have to be with Henry around the clock.

Henry's Oncologist called us Saturday morning to introduce herself and prepare us for what lay ahead for Henry. We learned that he would have to endure two years of chemotherapy. At the time, two years sounded like a long time. The only thing we could do was have faith. Henry needed us to be strong.

In Henry's words, "Daddy rocks, and Mommy loves."

I can remember lying with Henry that first night in the hospital. His little hands held my face. We fell asleep that way. In the days and weeks that followed, my son, who has always had an abundance of energy, amazed me every day with his strength and with his courage.

Daddy rocked. He and Henry started a Caring Bridge webpage, and everyone we knew visited it. The two of them have always had a similar sense of humor and would begin every day by posting a joke. It inspired others to post jokes too. They even had a contest. We could write a book with all the jokes. Henry did a lot of the writing on his webpage himself. It gave him something to do. We learned early on that it was good to keep him busy. We did whatever we could to keep his mind off of what he was going through.

I loved. I would massage his legs when they were cramping, and hold his head when he'd get sick. I fell asleep with my arms around him every single night. I would even learn to administer his chemotherapy. It allowed us to be at home more, and being home was good.

As strong as Henry was, I would learn he needed me to be stronger. When he'd hear my "cry voice," he would mention it. Henry didn't want me to cry, so I would cry when he couldn't hear me. To this day, the tears come easily, mostly tears of gratitude. I will always be the mother of a child who had cancer, and although it does not define me, it is a part of who I am. But I've learned there are others who need to hear my story.

I remember one of our Home Health Care nurses asking me if it was okay to say the word, "cancer." It surprised me she would ask me that, because "cancer" was what we were living with. She told me I'd be surprised at the number of people who didn't want to hear it.

Henry missed sixty days of school that year, but his teacher was amazing and would make house calls. I will always be indebted to her for that. She tutored him on what he was missing, and let him know how much he was missed. Henry was in third grade that year, and upon entering fourth grade nine months after his diagnosis, he had the highest score in his class on the yearly math assessment. Henry was not about to let cancer get the best of him.

Some days were more challenging than others. There's a long list of side effects that accompany chemotherapy, and every drug Henry was given brought something different to the table. One drug made his urine pink. One gave him terrible jaw pain, and another caused awful cramping in his legs. He lived with a bucket beside the bed. We'd try to stay ahead of the pain and nausea, but it was impossible to prevent it. His body was so pumped with steroids that he didn't look like himself. When he started losing his hair, his pillow would be covered in the morning. Eventually, we shaved it, but not without a sense of humor. He wore an avatar arrow pointing right down the middle of his head until that too ended up on his pillow.

Henry had lots of visitors and we made every day a celebration. We adopted the slogan for Stand Up to Cancer, and stood up strong.

When Henry lost his hair, sixty boys from his school shaved their heads in unity. A friend of mine arranged everything, and a local barber shop donated their talents. When you experience something like our family experienced, you get to witness the best in others. People came out of the woodwork offering their support. News affiliates in the area covered the event, and there was a nice article in the local paper.

Every member of a family touched by cancer is affected, but it can also bring a family closer. Although at times, they drive each other crazy, I know my kids love each other. They have a bond that I don't think will ever be broken. My older two know all too well what it's like to live with cancer. Sometimes, I think the effects of it have affected them even more than Henry. Although they didn't have to endure what Henry had to endure, they endured it in their own way. When you're young, it's not easy to have to take the back seat. But they too have emerged from the experience stronger. I am proud of who they've become.

I can't say that I don't still worry. When you're a mother of a cancer survivor, worry is second nature. But I continue to have faith. Sometimes I think about the other mother in the waiting room the day of Henry's surgery. I've come to understand how she could sit in the waiting room that day with the grace and strength she exuded. A mother does what she has to do for her family.

It's been four years since Henry was first diagnosed, and two years since he finished his chemotherapy treatment. Once again, a thick mound of dark curls crowns his beautiful head. Life feels pretty normal. I've learned attitude is everything. Life will give us other challenges, but as long as we have faith and family to lean on, there's no load we can't hold.

When you're faced with adversity, if you look for it, there's almost always a silver lining. I've decided when life gives you lemons, the best thing to do is to squeeze the hell out of them.

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