Rockne’s Story. More Than Just a Word
This family really touched my heart when I met them back in September 2015. I asked them to tell their story on our site so hopefully people will read this and can help them. If our debut comedy fundraiser does well on April 16th. Then I would love nothing more than to do one on their behalf. Please take the time to read about Rockne and his story which was written by his father Wayne Smith.
There are very few words in the English language that can take your heart and put it deep into your stomach like you’ve just descended the biggest drop on the worlds’ largest roller coaster. Words that leave you short of breathe and unable to respond; words that flood your eyes with tears and leave your head hanging with grim despair and utter defeat.
If you’ve ever had young boys, or have just watched them play for a while, you probably already know that they only play with things the way they are intended to be played with a portion of the time. The rest of their time is devoted to modifying, tinkering, adjusting, or just complete destruction of that toy. My boys are no exception.
March was nearing its end and the weather was finally allowing us to break free from the cabin-fever that the winter had bestowed upon us. Rockne, my oldest son, had just celebrated his third birthday a few weeks earlier. He and his younger brother, Brody, decided that their new Playschool basketball hoop would be much more fun if they laid it on its side and used it as a balance beam. Before long, Rockne took a spill, landing on his belly. Between tears and snot, “my belly hurts,” he cried; words that I would come to despise.
Thinking he had just knocked the wind out of himself, I told him to sit down and take a little break. He eventually recovered and the rest of the afternoon seemed very normal.
Later that night, as we all prepared for bedtime, the pain was back and more intense than earlier in the day. We gave him Tylenol and decided that if he was still feeling pain in the morning we would take him to the doctors. The medicine seemed to work and for most of the night Rockne slept well.
In the morning we were greeted with the agonizing screams of, “my belly hurts,” again. Thinking he may have ruptured something from the fall, I loaded Rockne into the van and headed for the Urgency Center on Jonestown Road. My wife stayed home with Brody. It could’ve just been a belly-ache or the flu but he had never acted like this before. His abdomen was looking a little distended and he was having trouble bending over to pick up toys.
The doctor immediately noticed the distention as well. Concerned, he suggested running some blood work and taking an x-ray. Rockne was not happy about the needle used to draw the blood, but later would become accustomed to them. The x-ray showed nothing. The blood counts were a little off. A simple virus could cause that though. The doctor, still showing concern, told us to go directly to the Hershey Medical Center. They would know we are coming.
“Something isn’t right but I’m not sure what it is,” he stated.
At this point I am beginning to get nervous. What was happening here? Why didn’t he know what the problem was? Why were we on our way to the Hershey Hospital? There were so many questions that I couldn’t answer for myself or for my wife on the other end of my cell phone. Rockne wanted to know why we were leaving and the doctors hadn’t fixed his belly.
We arrived at the hospital and I was instantly unsure of where to go. I had never been there before and the place seemed huge. Today I know nearly every square inch of the place. Rockne thinks he owns the place! We located the emergency room and were taken right back to a room. Moments later we were greeted by a young fellow, barely out of school, and a female whom he seemed to be training; or just showing off to. It was hard to tell the difference. He made light of the situation and sent us away with some jokes and a laxative. Rockne was simply constipated. Relieved, but unconvinced, we went home.
Later that night, we again heard those words that will forever echo in my mind. This time we arranged a babysitter for Brody and our twelve year old daughter, Zoe. My wife, a registered nurse, was coming with this time. She felt that I didn’t ask enough questions and she was right. Whether I didn’t know what questions to ask or whether I was just relieved to hear that it was constipation, I left that hospital, laxative in hand, hoping to never return. Not happy with what we were told at Hershey, we decided to try Harrisburg Hospital; a second opinion. This time they at least ran some tests. More blood work, much to Rockne’s dismay. Once again the results were a little off and were chalked up to something viral. After a barrage of questions from my wife we once again went home.
Rockne woke up the next morning without the screaming and the pain but he was still off from his normal behavior. He was still having trouble bending over and didn’t want to walk. It was March 31st, Easter Sunday. We decided to see how dinner went at my wife’s parents’ house. I couldn’t eat much. I was worried about Rockne. After dinner we announced that we wouldn’t be sticking around. We were taking Rockne back to the hospital. I think her parents thought that we were a little crazy but ultimately agreed that we were the parents and that we should do what we felt was best.
We went back to Harrisburg Hospital and agreed that we weren’t leaving until they did a CT scan. The doctor we met this time was an older gentleman and full of wisdom. He told us that he has come to trust parents with the concerns of their children.
“Nobody knows your child better than you,” he said frankly.
He told us of a story about his own child who ended up having open heart surgery. It turned out to be the same surgery that I too had as a child. We didn’t even have to demand the CT scan. He suggested it.
Finally, we had found someone who cared.
What happened next would change my world forever. The doctor returned with a nurse. He asked if we could go with him to talk while the nurse stayed to entertain Rockne. He offered us seats and began to tell us that our son had cancer in both of his kidneys. I don’t remember much of what was said after that. My world went black. I recall seeing my wife, eyes filling with tears, shaking her head no. Feeling guilty as I write this, I couldn’t even hold her. I was stuck on an island and I couldn’t find my feet. I looked to the floor. I went numb.
A New “Normal”
Do not pass “Go”. Do not collect “$200”. In fact, do not even go home. Their firm instructions were, “Go straight to Penn State Milton S. Hershey Children’s Hospital. They know that you are coming and they will have a room waiting for you.”
The words we heard in the few following days are only now, three years later, starting to make sense. Words like diffuse, anaplastic, and neoplasms; abbreviations like WBC and ANC; medicinal poisons such as vincristine, dactinomycin, and doxorubicin.
We were forced to make decisions that weren’t really decisions at all. In fact, had we not agreed to follow the recommended treatment plan Child Protective Services could have and would have been notified. And when it is all said and done we, the parents, are the ones who have to live with the decisions we’ve made; and our children will either live or not live with those decisions as well.
Rockne did undergo chemotherapy, surgery, and radiation. This was followed by an even more potent cocktail of chemotherapies. As November of 2013 ended so did Rockne’s cancer treatments.
Weeks went by. Rockne’s hair returned and so did his appetite. We adjusted to our new normal. Every three months we celebrated as Rockne’s scans showed no evidence of disease. He started kindergarten on time. We celebrated again. A year and a half earlier we weren’t certain that kindergarten was in his future.
As a family we began to get involved with the childhood cancer community attending and setting up events to raise funding and awareness. It was our time to give back what was so generously given to us. We were feeling good. We were also well aware that the first two years post-treatment were the most critical.
On November 9, 2015 Rockne had his two year CT scan. At first everything seemed to be running smoothly. We were told by our oncologist that everything looked fine and that he would see Rockne again in three months. Red flag! At two years protocol should have had Rockne moving to scans every six months. What we learned after questioning his oncologist still leaves a sour taste in my mouth. We learned that there was a spot. Not only was there a spot but they had been monitoring since February. Not only was there a spot that they had been monitoring since February, it seemed to be growing.
Obviously unhappy with this turn of events we demanded more answers; more testing. Days later Rockne had his first ever MRI. While in Lancaster, PA and moments before Rockne would take the stage to light the Christmas tree for an annual fundraiser provided by A Week Away we received the phone call with the results.
On November 27th., the day after Thanksgiving, we were told that not only was the spot bigger on the MRI but that there were multiple foci throughout the kidney; foci being smaller spots. “There is not much else it could be but cancer,” from the oncologist.
No Time to Sit Still
We immediately dove into researching every avenue that Rockne has left. Since he was bilateral he only has about 80% of one kidney left. He was already given some of the most aggressive chemotherapy available and history shows that most chemotherapies seldom work twice. Dialysis could be a strong possibility. In order to receive a transplant Rockne would have to remain cancer free for at least two years. Stem cell transplant is also an option but is often only used as a last resort.
Through our research we learned that arguably the top Wilms tumor specialist in the country was just a four hour drive to the south of us. We immediately set up an appointment with Dr. Jeffrey S. Dome at Children’s National in Washington, DC. Our research also turned up many success stories of tumors shrinking using natural therapies such as diet and supplements. The decision was made that until Rockne has his next scan on February 29th. we will be incorporating a natural therapy consisting of an all organic sugar-free pesticide-free diet and proven cancer fighting supplements. Rockne is seeing a naturopathic doctor to help us in this journey. At the very least we are hoping that Rockne’s body will be in top shape before starting any traditional therapy. A recent study has shown that 40% of all cancer deaths are a direct result of malnutrition. Why wouldn’t we want our son to have the best advantage he can? The problem is none of this is covered by insurance and is very expensive. One trip to the naturopathic doctor and three supplements totaled $300 out of our pocket. We recently boxed up all of our food and replaced it with food that cost twice as much. If you can help it would be greatly appreciated. The only thing we want to do is save our little boy. Thank you and God bless.
~ Wayne Smith (Rockne’s father)
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Please enjoy our video of Rockne’s journey. This video was made just months before our most recent devastating news. I always imagined the dancing at the end of this video as Rockne’s graceful celebration of overcoming the beast that tried to beat him. And the kiss at the end as a final goodbye to that way of living. Where we go from here is now unknown and we thank you for following our journey.