Heart of a Hero

Background

Our story begins with every parent’s nightmare: On April 28, 2009, we found out that our four-year-old-son’s headaches and vomiting were because of a brain tumor. Four weeks after Ian’s three-hour surgery, we found out that not only was his tumor malignant, but it was rare. The doctor said that Ian was one in a hundred-million people who had this Primary Adenocarcinoma of the Brain; and, to make matters more unbelievable, no child had ever had this type of cancerous brain tumor before. Adults with this type of tumor did not fare well. What did that mean for Ian’s treatment? It was a big guessing game; there was no protocol. After consulting with oncologists in Denver and Baltimore, Dr. Cook put together an aggressive treatment of six weeks of radiation and six months of chemotherapy.

As can be imagined, we went through a grieving process. We were given books (which I refused to read—I couldn’t even say the word tumor for a while), videos, and no promises by any of the doctors. Their sad eyes spoke volumes when they told us how sorry they were for Ian’s diagnosis. We all imagined the worst possible outcome.

After shock and denial, I became angry. How could God give me the son for whom I prayed for ten years, just to allow him to live for four years? Hadn’t I been faithful? Hadn’t I been a good witness to His love and grace? I screamed out my anger knowing full well that God could take it. Even through my tears, I knew there was something I wasn’t seeing. After releasing my anger, I felt purity in my faith. God is good. God is love. That’s all I needed to know about Him; that’s all I needed to try to be for Him and others—especially my son. I let everything else fall away.

Being a Hero for Ian

Part of our bargaining stage took form in not allowing anyone to speak or even think negatively about the outcome of Ian’s situation. I told well-meaning “realists” to leave my house if they couldn’t stop talking about Ian not making it through the year. I was accused of being in denial. But it wasn’t denial; it was the belief in positive thought. Statistics claimed that children survived Cancer better than adults. A possible reason for this is that children don’t think about dying; they just want to get better, so they can play again. My mission was simple: If we only thought about a positive outcome, Ian would never know how serious his condition was. He could be his own, best ally.

To help me with my mission, people from all religions prayed for Ian’s healing; from those who had no religion, we encouraged positive thoughts. One thing I knew without a doubt was that fixing our thoughts on what is good and beautiful and worthy of praise is how God wants us to live. That choice doesn’t have religious boundaries. I encouraged that position in everyone who wanted to pray for Ian or help us through this. There were moments of depression that hit us all, but we kept that away from Ian. We talked about the future and all the beautiful things he would be able to do someday.

Staying positive helped us reach acceptance; without anger and depression blocking them, we could see our blessings. Our perspective on life in general changed. The day Ian was diagnosed with the tumor, I left work. How could I teach other people’s children when I wanted to spend every precious moment with my son? We weren’t concerned with how we would pay the increasing bills with my decreasing paycheck; none of that mattered. We learned to give money its proper place in our lives. It was a means to an end, not the end itself. Putting family first improved our lives in a way that money could never buy. Even though I went back to teaching the following school year because we needed to continue with my health insurance, we didn’t lose that sense of family. We never would have had that outlook without Ian’s situation.

Our Dr. Heroes

In July, Ian began radiation treatments. Dr. Hazuka, the Radiation Oncologist, told us about the tentacles that were beginning to form in the tumor. It was getting ready to spread throughout Ian’s body; we found it just in time. No one had told us that before. That was how Dr. Grabb, the Neurological Surgeon, knew it was malignant before the tumor was sent out for testing. Luckily, Dr. Grabb was able to remove the entire tumor with that one surgery. Was it God’s gentle nudging that wouldn’t let me wait out the headache/vomiting cycle (there were only two)? Why did a physician’s assistant send Ian for a CAT scan when every other doctor we spoke to told us he or she would not have sent him to get a scan based on my concerns? God’s goodness and timing was slowly being revealed.

Allowing Others to Become Heroes: Make-A-Wish

We also allowed others to bless us; it was hard to accept that kind of charity, but we humbled ourselves for Ian’s sake. Our oncologist let us know that Ian was eligible for a Make-A-Wish trip. That thought hurt my heart. We had not made a family trip to Disney with Ian; we were waiting for him to be a little older. But now, we had to think about the possibility of there not being a later. After his six-weeks of radiation, Ian was weak, but not as weak as he would be after chemotherapy. The doctors and nurses had never seen anyone respond so well to radiation treatments; they began to call him a super hero. Ian was stronger than we could have imagined. Even though we were encouraged by Ian’s resilience, we were worried that the trip might be too hard on him. We ended up deciding that we didn’t want to wait to give Ian his dream trip to Disney. We were thankful for the incredible charity of Make-A-Wish, Give Kids the World, and the wonderful treatment of the theme parks we went to.

Allowing Others to Become Heroes: Our Community

Not only did we accept the blessings of organizations, but we also accepted the philanthropy within our community. We encountered true heroism in the acts of love and compassion from family, friends, and colleagues. Individuals sent checks for our bills and gifts for Ian; people brought meals to our house; and colleagues organized a silent auction, coins-for-cancer drive, and proceeds from performances and jewelry sales, so we could concentrate on Ian and not on the mounting medical bills. At times it was a bit overwhelming to have so many people shower us with gifts, money, food, and toys; but by allowing others to help us, we helped them as well. People need to find their goodness. When a situation arises that sparks compassion with a desire to act upon it, people need to follow their hearts. Being good and kind to others blesses everyone’s soul.

Allowing Others to Become Heroes: Nene

It was through the silent auction that we indirectly met Nene, the Denver Nuggets center. Nene heard about Ian through Anne Mangino, Assistant Coach Larry Mangino’s wife. Since Nene had just gone through his own fight with cancer, he wanted to give something to the Nugget’s gift basket she was putting together. He signed a pair of his shoes and added a “God bless you” to it.

Little did we know that Nene’s compassion would lead us to another blessing. The family who won the Nuggets’ Gift Basket gave Ian the shoes, another selfless act. Ian loves those shoes and looks adorable in them. When Anne told Nene that Ian had the shoes, Nene said he wanted to meet Ian. We took him up on that offer on Ian’s fifth birthday, January 17^th, 2010. Larry Mangino took Ian and my husband David on a tour of the Nuggets’ training facility, weight room, and locker room after the game. Nene signed Ian’s #31 jersey and hat and called Ian his little man.

Ian and Nene had an instant connection. Ian was in awe of this tall man with the captivating smile. Beyond that, Nene’s kindness and love for this boy he hardly knew emanated from every part of his body. Nene picked up Ian and gave him a hug and whispered prayers over Ian’s little bald head. With complete confidence Nene said he knew Ian would be okay: “You just need to stay strong. Make sure you eat good food like rice and beans and vegetables.” It’s hard not to feel the power behind the words of a man who has been there and back.

Ian came back with, “You mean like broccoli?”

“Yes. Broccoli. That’s my favorite.”

Ian took a thick gulp, “Okay.” He agreed but didn’t like the suggestion. I’m not sure what sparked Nene’s next move, but he kissed Ian’s hairless head and asked his manager Alex to give us his number so we could come back to see Nene again. We were humbled by this stranger’s generosity.

We left that night, and Ian couldn’t stop talking about how much he loved Nene and how nice he was. Ian started doing things that were beyond what a boy getting ready for his sixth chemotherapy treatment should be able to do. He started running around the house with a basketball and jumping up to an imaginary basket saying he wanted to be like Nene, so he had to practice. He started eating better and demanded that I buy him broccoli. He ate it even though we could tell he was not fond of it. Ian even made a Mii for Nene on his Wii so he could play with his new friend. His new relationship with Nene gave Ian the push he needed to get through his last chemo treatment.

The next Nuggets’ game after we met Nene, we were so excited to watch our new hero on TV. Nene scored the first point. He pointed to the sky, and we watched his lips form the words “for my little man.” My eyes filled with tears. I thought I might have imagined it, but the next day Anne confirmed it. Nene dedicated his first basket to Ian. From that moment on, we became dedicated Nuggets’ fans and lovers of Nene.

Ian had his last chemo treatment in February. It was a three-day process, and he needed to be connected to an I.V. for fluids for a week. While connected to his fluids’ bag, Ian said he felt so strong he could do push ups. He put his feet on our ottoman and asked me to video tape him so we could show Nene how he was staying strong. A few weeks later, he was in the hospital with a fever. It was his third hospitalization; chemo does that to a body. He needed antibiotics, blood transfusions, and fever reducers to keep him safe. He also needed to be monitored for any infections that could be developing in his body. Like every other time he was hospitalized, Ian was released a few days later, on his way to recovery.

It took awhile before we could contact Alex about seeing a game as Nene’s guests, but when we did, it was so sweet. After the game, Ian called Nene’s name while he was signing autographs. Nene turned around, saw that it was Ian, said, “My little man,” and picked Ian up. The first thing Ian said was, “Nene. I ate broccoli!” Nene’s smile lit up the room. Nene carried Ian around as he met other people. He put him down when other fans wanted a picture with Nene, but then he would pick up Ian again.

There is something to be said about thinking positively. Nene’s strength and faith helped Ian remain strong; his compassion for our son helped us to stay strong.  It’s rare to find a man who not only wants to be a role model but takes steps to ensure that he is a good one.

The Final Hero

As I look back on this time in our lives, I realize that we were blessed with the presence of many heroes. People who do not have super powers, but people who use the powers they have for good. I don’t know where we would be today without those people in our lives. However, the one person who stands out as the most amazing hero is Ian. He battled his Cancer with heroic strength. When we went to Universal Studios, we met many of Ian’s Marvel heroes, but we knew that Ian was the real hero. It is one thing to experience fear and courage when one has super powers; it is quite another when one is a four-year-old boy fighting for his life. He overcame all odds and beat the villainous cells. In times of despair, I imagined my son, standing tall with his cape billowing behind him. His sign read: “Courage, Hope, and Love.” After all, what else can be found in the Heart of a Hero?