Willem Bernard Hladun’s life was defined by struggle. He struggled for the nine months he spent inside his mother’swomb. Will’s mom spent half her pregnancy in bed, maintaining a peaceful, still atmosphere that would allow his body to grow. It was unclear if he would make it to full term, but once he did, he entered proudly into this world on July 14, 2008. His arrival formed a trio of Hladun boys, alongside his brothers Bennett, 5 and Maxwell, 2. My three sons, his father proudly announced to the gathering of family and friends in the waiting room.
Will entered this world with a small clue of what was to come, an unidentifiable birthmark on his left shoulder. No one could quite place what it was or how it got there, but most agreed that it did not appear to be dangerous or harmful. Visits to the pediatrician and dermatologist confirmed one thing: no one knew what the heck it was. We all should have known then that the boy was going to be special.
For two months, Will and his family lived in blissful oblivion of the monster that was growing inside of his body. Sure he slept a lot—babies do that, and with two older brothers, mom and dad were thankful for the rest. Sure he got sick a lot—babies do that too, and it was probably just a milk allergy like his two older brothers had. The clues were all there, but the pieces of the puzzle weren’t being laid out on the table together.
At his two-month checkup, Will got the usual vaccinations and also the standard measurements. His doctor mentioned that his head circumference measured a little larger than normal, but it was only something to keep an eye on. These two things, the head measurement and the shots, would prove to be the final clues needed for Will to begin telling his story.
On September 12th, two days before his two-month birthday, Will’s right thigh swelled to extreme proportions. His mother rushed him to the emergency room in Saratoga, NY. The doctors there tried to rule out infection, fractures, insect bites, but couldn’t find the answer. They sent him onto to Albany Medical Center, where additional tests were conducted. Slowly the pieces of the puzzle started to come together. A doctor who treated Will that night would later state that tumor in the thigh was a consideration, but seemed to be such a longshot and so far down on the list, it wasn’t considered seriously. However, as the other pieces started to become clearer—the head circumference, the birthmark—there was heightened concern. A catscan performed on September 13th confirmed that Will’s head was filled with a large amount of fluid. The next day, an MRI confirmed the fluid was being caused by a mass in the brain, not thought to be cancerous at that time. However, on September 15th, one day after his second month birthday, the puzzle was finally solved—the mass in the brain, the swelling in the thigh, the birthmark on the shoulder—all of these were forms of some kind of cancer.
Three days later, even worse news arrived. The cancer that Will had was known as rhabdoid, or more specifically, atypical terratoid rhabdoid tumor (AT/RT), a rare form of cancer highly considered to be incurable and untreatable. For every 1 million babies born each year, only three will be diagnosed with this form of cancer. There are roughly 30 cases diagnosed annually. Once diagnosed, the prognosis is dismal. If you lined up ten babies in a nursery with AT/RT, only one of those babies would likely be alive in 24 months. There is no answer as to why that one child survives while the other nine do not. There is no standard form of treatment and no “right way” to care for the disease. Doctors simply throw their best guess at the wall and hope that in one to two years, it sticks.
Of course, little Will was special. Not only did he have a tumor in his brain in an inoperable location, as do most AT/RT patients. He also had tumor growth in his soft tissue (thigh), skin (shoulder “birthmark”), and bone (right femur). Clearly, this made his treatment even more challenging for his caregivers. Palliative care could have been an option, and no one would have challenged or questioned the decision, considering the advancement of the disease. But this was not part of Will’s plan. He had a story to tell and needed time to share it.
For five months, Will endured five rounds of chemotherapies, four surgeries, countless MRIs, cat scans, and a myriad of tests. After two rounds of chemotherapy, he was able to rid himself, nearly entirely, of the tumor that was located in his brain. However, that pesky tumor is his right thigh was a little more persistent. Despite the chemo, it only slightly responded at first, and then quickly started growing back again in December. In January, it was decided that Will’s right leg would be amputated. Prior to the surgery, the family planned one last body and brain scan to make sure that the only evidence of disease would be in his leg. What they found, however, shook all those involved to their core. The tumor in Will’s leg had grown so much that it eventually broke the femur in his leg. It appeared as though that break caused cancer cells to travel to his lungs and stomach. The disease had quickly gotten out of control. Because AT/RT is virtually chemo-resistant, there were little options left for Will. On February 2nd, Will was placed on hospice. He passed away five days later on February 6, 2009, eight days shy of his seven-month birthday.
Will Hladun wasn’t born famous, but achieved fame by the time he had reached six months of age. He didn’t ask to be famous; he didn’t desire to be known. He didn’t strive to change people’s lives or change how people treated each other. Yet, in his short life, he managed to do all of these things.
But Will also didn’t ask to get cancer. He didn’t pick the nearly incurable kind that afflicted him. He didn’t want to be poked with needles and deal with multiple surgeries. That too was thrust upon him from the day he was born.
Yet the accomplishments of Will’s life and the disease that lived within him were inseparably linked, and represented who he was. He could have been just another baby and his mother and father would have lived happily ever after. But that didn’t happen. Instead, he became our Brave Will, and for that, we will be eternally grateful.
What does it mean to have Will Power?
To not take for granted the joys you have in life?
To treasure the smallest, sometime inconsequential, gifts that you have obtained in your life?
To realize that the worst of times may not be as bad as they seem?
To not sweat the small stuff?
To us, Will Power is all of these and so much more. When Will was battling cancer, there were constant reminders of the effect that Will’s life had on people all over the world. Letters received from five continents, fifteen different countries, and nearly every state in the United States told stories of how people viewed life differently because of Will.
They told of how they had become a better parent, a better sibling, a better son or daughter, a better friend, or a better colleague because of the lessons that Will taught.
They told of how that trip to the doctors that they dreaded wasn’t going to be so bad after all.
They told of how the uncomfortable conversation with a colleague at work wasn’t so bad after all.
They told of how that spilled milk at dinner by a child was simply wiped away with little fuss made.
They told of how they hugged their little girl a little tighter at night. They told of how they spent those extra few minutes catching up with their mom on the phone.
That’s what Will Power is to us…the power of one little baby to forever change the way you live your life.