June 17, 2001 – November 24, 2018
Diagnosed: October 9, 2017
Written by Will’s family
Will McKone’s story is remarkably similar to the stories of every other child and young adult in the ChadTough family. Will was an incredible person, full of positive light and energy, unconditional love and empathy. Will had a great sense of humor and a brilliant and infectious smile; he loved everything about his life and made a lasting, positive impact on every person with whom he came in contact, and he was taken from us by this terrible disease after a heroic – yet ultimately unfair – battle.
To speak of Will in the past tense, however, is not entirely accurate, as Will still makes his presence felt in our lives every day – we still laugh with him, have conversations with him, and feel his presence in the various signs he sends our way – each one filled with peace and love.
WillieSmac – a nickname he received when he was about 7 years old as a tiny linebacker on his youth football team – signifies the impact he made despite his diminutive stature. A few of us also think it may reflect his approach on the basketball court where he had a tendency to talk a little smack as he launched 3s without hesitation (WillieSmac never saw a shot he didn’t like; defense, on the other hand – not so much). Will’s favorite play, which he perfected in the driveway on his older sister, Lindsey, who is quite competitive herself, was to dribble and draw her closer to him on defense, and then, without warning, bounce the ball off her forehead to himself, and while she reacted with shock at the effrontery of such a move, drove by her for a layup, laughing the whole time while declaring it as an absolutely legal move – not his fault she was too slow to react… patented WillieSmac.
Will was a gentle soul, always extending a hand to the underdog – in fact, after Will passed, our community came up with a saying: “WWWD” – What Would Willie Do – to reflect how Will led his life and how we should lead ours to emulate his goodness. We learned of Will’s many under-the-radar acts of kindness to let people he encountered know they mattered – the father from Little League who shared how Will stepped up to protect his shy son who was being picked on by the older boys, and how the father was still so appreciative of Will’s kind act 7 years later. Many of the handwritten notes we received from Will’s classmates reflect the same experience – one classmate told the story of how she was never very interested in sports and was kind of an outlier in the class, but during recess, when she had to play a game, Will would pick her to be on his team, and, while playing football, would diagram plays designed to get her the ball and named the plays with fun labels that incorporated her name in them. She had such a love for Will because he made her feel special.
After Will passed in November of his junior year in high school, Lindsey found in one of Will’s notebooks a list of his goals for his sophomore year:
- Get all A’s
- Do one random act of kindness per day
- Live life as I want to
- Be nice
What sophomore in high school, after being diagnosed with an inoperable brain tumor, enduring an invasive biopsy of the tumor that left him constantly dizzy and unable to participate in any after-school activities, and going through 6 weeks of daily radiation treatment after school, would have the maturity and perspective to create such a list for himself? Remarkably, Will met every one of his goals. This is WWWD.
Although Willie truly had unconditional love for everyone he met, the apple of his eye is his sister, Lindsey (with his Grandmother Marilynn a close second…). His love for Lindsey is tangible, and we can see it in every picture they are in together – Will’s beaming eyes and content smile showing how happy he is to be with his sister and how she means the world to him. Of course, Willie also knew exactly how to kid his older sister, as that is what younger brothers do!
Will’s story, however, is somewhat different in that we found out Will had a brain tumor when he was about 13 – well before he had any symptoms. He was short for his age, so we were considering growth hormones; an MRI of his brain before treatment revealed a little spot – an incidental finding. The next thing we knew, we were meeting with a pediatric oncologist at our local hospital, a world-renowned children’s hospital. We were reassured over the next few years this spot was probably nothing and not to worry about it, but to monitor it with an MRI every 6 months. The spot never stopped growing, albeit very slowly, but it could not be biopsied because of its location. In August 2017 when Will was 16 and we were hitting baseballs in the cage, Will said he was starting to see shooting stars as he closed his eyes to go to sleep. Within a week, Will had a craniotomy because by now the neurosurgeon felt he could safely biopsy the tumor. The initial results were not the worst, so Will was scheduled to start proton radiation with a clear path to recovery, but on the day before he was to start, our Oncologist contacted us to inform us the makeup of the tumor contained the H3K27M mutation. Needless to say, that was not a good day, but we adjusted to the new path, and soon thereafter, Will started photon radiation, going to radiation treatment each day after school for 6 weeks. Ultimately, Willie successfully completed his sophomore year of high school earning the straight A’s he set as a goal, but he could not play basketball or baseball because of the constant dizziness he felt when he moved too suddenly.
Will then went to Northwestern for a summer leadership program for which he was selected, but during it, he started feeling a loss of strength/control in his right hand. By the time he completed the program and came home, he had a noticeable limp, impacted speech and trouble with his right hand – it had been about 6 months since the end of his radiation treatment. The next MRI showed the tumor had started to grow again. Over the next few months, as Will’s body progressively stopped working, Will’s attitude remained so positive – it truly was the reason why we could stay so strong – focusing on what he could control in the midst of losing the ability to control so much. Through our own diligence, we found out about an ONC201 trial and Will actually started on it, but by then his symptoms continued to worsen and Will ultimately passed on Nov 24, 2018. At that time, Will was under the care of a neurosurgeon who was the father of one of Will’s classmates and who had successfully treated a patient with glioblastoma who was still living a normal life 17 years after treatment!
On the day of Will’s passing, we still thought that doctor was going to walk through the door with a cure – why else would we have moved to Houston 20 years earlier from a different part of the country, minutes from a world-renowned children’s hospital, incidentally find the tumor well before any symptoms, and have a classmate whose father is a highly regarded neurosurgeon with the brilliance and latitude to develop and deliver a novel treatment that saved the life of his patient with glioblastoma!?! Unfortunately, DIPG did not care. On the day Will’s organs were donated to help others, the hospital was illuminated in a shining blue light, showing the world a patient had provided a gift. This is why we remember Willie with a blue heart.
Our family became aware of ChadTough by reading Maureen Dowd’s NY Times article that introduced Chad through his grandfather, Coach Lloyd Carr from Michigan. We learned ChadTough’s approach in beating this horrible disease is through collaboration – an approach of which we strongly agree; there are so many unbelievably dedicated and talented individuals and a wealth of resources committed to solving this equation, but we found there is little collaboration of effort – if we could harness these individual initiatives into more of a common alliance, the impact would be exponential. This cancer is too smart and devious for any other approach. We also greatly appreciate and align with ChadTough’s dedicated service in providing guidance, knowledge and support to families experiencing this dreadful diagnosis and who desperately need help in navigating the best path forward for their loved one and family. It is such a blessing during a time when blessings are so needed.
So, this is Will’s story; it has not ended – it has evolved and continues to live on in our – and pretty sure, WillieSmac’s – heart, mind, soul and spirit, full of peace and love.
WWWD
