Bravery – MacKale’s Surgery

Jono Nagel Stories

Kids are fearless, reckless and infinitely braver than most adults. I think that God makes them that way to remind us that he’s in charge, working behind the scenes and sometimes we just need to have faith. I know that firsthand from being the mom to three very active boys. When they were little, I would catch myself holding my breath and praying that their latest adventure didn’t send us speeding to the hospital with a broken bone or the need for stitches. While I have cursed this fearlessness in the past, I know how truly blessed my own son was with that same bravery and faith that has sustained during his difficult journey with cancer.

MacKale, my oldest son, was 11 years old when his life was derailed with the diagnosis of osteosarcoma. A cancerous tumor was found in his left tibia, a bone in his leg that runs from knee to ankle. That tumor and all it brought with it would mean leaving his brothers, his school, his dog and his home for months to battle this wretched disease. And if that wasn’t enough, he would endure a 14-hour surgery to rebuild his leg with a cadaver bone. He was brave though. He did it. He endured the pain and the physical therapy and the learning to walk again. While it took many months to get him there, he was even able to return to skiing that next year on his own two legs.

But as is often the case with osteosarcoma, bravery doesn’t stop with the last chemo treatment. That same spring, MacKale started having pain in his reconstructed leg. More physical therapy and biopsies revealed that the cadaver bone used to rebuild his leg was eroding. His limb salvage had failed and he needed to make some tough choices. The logical thing – the safest thing – would be to simply replace that cadaver bone with a metal rod and do a complete knee replacement. But a knee replacement meant increased possibility for infection, more surgeries, more physical therapy and the dreaded, ‘you won’t be able to . . .’ conversations.’ These were the worst. He wouldn’t be able to run or play basketball, soccer, or ski!!! But . . . he would still have his leg.

After two years on crutches and countless limitations, more of the same wasn’t good enough. So, we gleaned recommendations for second and third opinions from surgeons throughout the country that might help. But, while these were wonderful and caring surgeons who spent precious time explaining to us all our choices, we were never any closer to making a decision. MacKale just didn’t feel like he was ‘there’ yet.

While these surgeons may have not brought us any closer to an answer, they definitely helped solidify one thing in MacKale’s mind. The need to have a leg that looked ‘normal,’ was no longer as important as having the ability to move and be active on his terms. He was no longer interested in saving his leg.

Sometimes it just takes the right person to say the right words, and for Mac, Dr. Gibbs at the University of Florida was that person. While he assured MacKale that he could do rotationplasty, a procedure where part of the leg is removed and the rest is rotated 180 degrees so the ankle serves as the new knee joint, he didn’t think it was the best choice for Mac. Dr. Gibbs was confident that the option that was best was a simple ‘above the knee amputation.’ Our persistence and faith in God led us to the right person to say the right words to solidify MacKale’s decision. He was finally ‘there,’ he was at peace and he was confident that amputation was his choice.

And so, a week after his 14th birthday, my brave sweet osteosarcoma warrior said good-bye to his seemingly ‘normal’ looking leg and hello to his new high-functioning ‘stump.’ There is no more talk in our home about all the things ‘you can’t do.’ Instead, we have been watching the Paralympics and dreaming about all the possibilities for fun, sports and play that God has now brought to Mac with this new life.

While we are still painfully new to the amputee world, we are very aware that a whole new world has suddenly opened up to our entire family. I expect to see my family foursome out golfing this summer, MacKale shooting hoops with his little brothers or kicking around the soccer ball, and I can’t wait to ski together as a family again. All because a boy was brave enough to take a leap of faith.

Written by Marsha McGuire
Marsha is a kindergarten teacher from Cadillac, Michigan where she lives with her husband and their three sons, MacKale, McCoy and MaGill. In the October of 2015, MacKale was diagnosed with osteosarcoma when a tumor was found in his left tibia. MacKale spent the rest of his school year fighting this horrendous disease at Helen DeVos Children’s Hospital in Grand Rapids, Michigan. He underwent limb salvage surgery in January of 2016 and completed his chemo regimen in June. Today, MacKale is an 8th grader and a recent amputee. He is anxious to get the green light from his doctors to pursue his first prosthetic and is looking forward to finding new ways to enjoy his beloved sports and spend lost time playing with his friends and little brothers, and Marsha has happily returned to her classroom. If you’d like to learn more about MacKale’s fight, you an read more at www.mackalesjourney.blogspot.com