Ross' Story

“Regular Ross…”

 

Up until July 3, 2009, our son was “regular Ross”, an upbeat “glass half full” child who loved his family & friends, playing hockey as left wing #33, cheering for the Blackhawks, spending time with his big sister Rachel and his border collie, Augie, and caring and praying for the homeless. But July 3, 2009 was the last day Ross' life was anything but regular. That night, we took Ross to the hospital for a routine MRI to check the headaches he was getting during hockey practice and they found a brain tumor in the base of his skull. It was an aggressive medulloblastoma, which called for immediate surgery and a rigorous course of chemotherapy and radiation. Ross began the journey no child should ever have to take. 

 

“Life is Good!”

 

For the next 30 days, we traveled daily to downtown Chicago to Children’s Memorial Hospital (newly named Ann and Robert H. Lurie Children's Hospital of Chicago) at 5:00 a.m. for chemotherapy treatments, then crosstown to Northwestern Hospital for radiation. Ross handled it all with his trademark upbeat attitude, pushing past his physical fatigue to keep a regular life. On the first day of second grade, we evaded multiple speeding tickets trying to get Ross out to his suburban school in time to march in with his classmates. This was one of hundreds of moments that we stood amazed, proud and humbled by Ross' strength.  He insisted on heading straight to school that day, and despite the traffic in our way, we made it in time!

 

Over the next six months, Ross endured monthly, in-patient chemotherapy treatments requiring 3-night stays. We promised we would always be there whenever he opened his eyes, even though Ross was never crying, never afraid, but instead would always point us to the joy of his day. In the fall, Ross had an MRI and received an all clear, but we needed to continue with regular MRIs.   

 

Ross was scheduled for an MRI every three months to keep a close watch on his health.  As that MRI approached the fear of what may come to be was excruciating for our family.   But Ross carried on, attending school and playing his heart out with his hockey team. It was his way of feeling whole again, and we watched our #33 from the sidelines with worry, yet admiration for his perseverance. “Life is good” was Ross’ motto, and at no time was the statement truer for him than when he was on the ice. 

 

Our entire family is eternally grateful for the outpouring of support we’ve received from so many in Ross’ lives including everyone at his school, in his neighborhood, at his church, his hockey team and so many more. We also made a celebrity friend in the fall of 2010:  Chicago Blackhawk Hall-of-Famer Stan Mikita.  He introduced our family to many of the Blackhawks and Coach Q, and their show of support through Ross’ battle was genuine and touching. 

 

“I’m good...”

 

Later that year, an MRI revealed cancer at a new location in Ross’ brain. After yet another surgery, we now faced the problem of finding a new drug that could treat him. We discovered there are very few pediatric brain cancer drugs available and in the past 20 years there have not been any new chemotherapy drugs approved!

 

So, in February of 2011 we agreed to a stem cell replacement using cells from Ross’ spine, which sent Ross into a full isolation room for a month.  When he needed something from his father, he would shoot his nerf gun at him, in true, fun-loving Ross fashion. We’ll never understand it, but through it all, Ross kept up his positive attitude, insisting he was “ok” and showing concern for others not himself. The treatment delivered some success.  We had one more good summer, before the cancer returned in the fall of 2011.

 

A clinical trial kept the disease at bay through spring of 2012. In the fall, it returned and another clinical study gave Ross strong results.  Sadly, in February 2013 an MRI identified the return of cancer.  We heard the words that stop a parent's heart.  Our options were exhausted.  There was nothing more clinically that could be done for Ross.

 

“I Love You…”

 

March 8th was Ross’ last birthday and we celebrated with a movie party at home, and a Blackhawks game on March 10th where he received the royal treatment.  Soon, though, his little body began to show us what he was truly fighting. School and hockey had come to a close. Yet Ross wasn’t afraid. He was certain he was going to heaven and that he would meet up with many very special angels there. He told us he had been to heaven in his dreams and shared amazing, happy details about it. Still, instead of praying for himself, he prayed for the homeless every night. 

 

Before Ross passed away, he asked the three of us to promise that we would "never let another child go through what I've gone through".  We promised Ross.  And this Foundation is that promise kept.  

 

The Wednesday night after Ross passed away, the Chicago Blackhawks were playing the Detroit Redwings. Mr. John Weideman, Blackhawks announcer for WGN helped us break the news to those who loved hockey as much as Ross did: “Ross has now joined the greatest hockey team roster ever assembled.  The one up in the sky.”

At The Ross K. MacNeill Foundation our mission is to raise money for research and awareness for this diagnosis. R33M™ is currently investing in exciting research. Take a look & join us with your donation.

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The Ross K. MacNeill Foundation

333 N. Michigan Avenue

Suite 633

Chicago, IL  60601

info@R33M.org

The Ross K. MacNeill Foundation is a non-profit, tax-exempt public charity under section 501(c)(3) of the Internal Revenue Code.  EIN #46-3822276