I Know A Fighter! #EndNF

Thank you to Collective Bias, Inc for allowing me to share the story of my brave nephew. All opinions are mine alone. #IKnowAFighter #CollectivBias #EndNF

“Brian has a brain tumor. They’re rushing to Primary Children’s right now.”

Those were the words that seemed to stop my blood cold. Brian? My healthy, smart, playful, active, talented twelve-year-old nephew? Brain tumor?

It couldn’t be. We hadn’t heard anything about him being sick. He played baseball and excelled at school. He couldn’t have a brain tumor.

But he did.

It started with headaches that wouldn’t go away and a hand that wouldn’t stop shaking. For weeks he complained of headaches. His left hand would shake so badly, it almost looked like he was doing it on purpose. Finally, his head was hurting so much, he slept all day Sunday. Then he slept most of the day Monday, until his parents decided to wake him up to take him to the doctor that afternoon. The doctor decided it was probably a migraine, and that they were going to have to treat him with some migraine medicine. Almost as an afterthought, the doctor ordered an MRI for the next morning. That was a Tuesday, almost three years ago.

Not quite an hour later, they were packing and making plans to head to the children’s hospital four hours away. The doctor had called ahead, and they were waiting for Brian.

He had a brain tumor the size of a golf ball embedded in his brain stem.

It was blocking the spinal fluid from draining, and if they didn’t alleviate the pressure, within months, he would be permanently blind, or even dead. The tumor was causing the weakness and shaking in his hand. And looking back, they could see it was affecting his face as well. His smile slipped on the left side.

Before they left for the hospital, my husband rushed over to Brian’s house to help with a special prayer for Brian. When it was over, Brian looked up at his dad and asked, “Am I going to die?”

Even now, almost three years later, just thinking about it makes my throat get tight and tears spill over my cheeks.

Two days later, Brian had his first surgery. They removed a tiny bit of his skull to relieve the pressure build up in his brain. He was in the hospital for 8 difficult days. He was in extreme pain from the headaches and had to sit with his head in a specific position. If they didn’t get the pressurization under control, Brian would lose his vision.

After that, it was a waiting game. His tumor was so far embedded in his brain stem, that if they operated right then, he’d be paralyzed permanently. They had to wait until his tumor grew large enough so they could safely remove it.

But Brian is a fighter.

Soon after, he started school and attended for almost two weeks – something the doctors were amazed by! One morning before school, he slipped in the shower and split his ear open. The doctors decided he couldn’t wait any longer. His strength was failing quickly, much more rapidly than they thought, and it became dangerous to wait any longer.

What the doctors first thought would be a 6 – 12 month wait had suddenly come to an end at only 2 months of waiting.

The day before the surgery, they did a final MRI, which showed not only the rapid growth of the tumor, but also that there was ¼ of an inch of brain tissue that they would have to cut through to get to the tumor.

Brian – courageous as ever – asked the doctor, “Will I be paralyzed?” And the nuerosurgeon looked him straight in the eye and said, “Maybe.”

The next morning, with no guarantee that he wouldn’t be paralyzed, Brian was wheeled back to surgery. The team called his parents every hour and a half to report how things were going. After seven hours of surgery, the neurosurgeon came out.

It was a miracle. They lifted the temporal lobe and the tumor was right where it should be. Even though the day before the MRI showed a quarter of an inch of tissue they’d have to cut through, the tumor had moved and the doctor didn’t have to cut through any brain tissue.

When Brian woke up from anesthesia in the ICU, the doctor asked him to wiggle his toes. He did. With a sigh of relief, the surgeon said, “Oh, I’m glad to see that!”

Recovery was, at times long and trying. Brian missed school and had to have an in-home tutor. He also attended physical and speech therapy for several months. Some of the information in his brain was misplaced, so the speech therapy helped him put everything “back in the right files.”

On the other hand, his recovery was full of rapid progress and miracles. He was able to transition back into full days at school a lot sooner than they expected. He only ended up missing close to three months. His physical progress was also exceptional, and he was able to finish his physical therapy in 3 – 4 months; a lot sooner than they expected. He and his family felt their faith and trust in God grow.

Brian is a fighter.

Three years later, Brian has a scar to show for his experience. He likes to have a little fun and tell people he got bit by a shark. 🙂 Aside from his “shark scar,” he also has courage, determination, an appreciation for life, and a spot on the freshman baseball team! The first time he pitched after his surgery, my husband and I cried. It felt a little silly to be standing in the dirt, surrounded by cheering family and fans, with tears streaming down our cheeks. But we smiled and cheered through our tears, feeling our hearts swell with happiness and pride. We are so lucky to him in our lives. To see his good example of courage and faith.

Brian is a fighter.

And he’s not the only kid fighting a battle with tumor or childhood disease. May is NF (Neurofibromatosis) Awareness Month, and the Children’s Tumor Foundation is striving to spread the word about this disorder so we can end it through research.

NF is a genetic disorder that causes tumors to grow along various types of nerves. NF can also affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body. NF affects one in 3,000 people of all populations – making it more prevalent than cystic fibrosis, Huntington’s disease, and Duchenne muscular dystrophy. Currently, there is no effective treatment or cure.

Did you read that? There is no effective treatment or cure! But we can help change that. How? NF manifests itself in a number of ways and there are a number of ways to fight NF! The “I Know a Fighter” campaign is an opportunity to recognize the many ways the community pushes back against neurofibromatosis – the scientists researching treatments and a cure; the volunteers driving awareness in the community; the donors raising money to fund research; and the family supporting one another at every doctor appointment and test.

While Brian did not have NF, he fought his battle bravely, just like all those currently fighting NF.

This is how I fight: I RUN, TREAT, RACE, WALK, VOLUNTEER, SHARE, STUDY, LOBBY, etc.

Pick one! Right now, I’m fighting by studying, learning, and sharing. Knowledge really is power. Learn more for yourself by visiting CTF’s website, their Facebook, Twitter or Instagram.

Check out their calendar and see if there is an event in your area. Can’t find one? Organize one! The Children’s Tumor Foundation has instructions to walk you through starting your own event.

#IKnowAFighter – do you? What will you do to fight?