About Max

The Bravest Superhero - July 2008

“During quiet times, our innocent little four-year-old asks so many honest and vulnerable questions that break my heart. Sometimes he just says that he is scared and he clings to me and weeps for long periods of time without telling me why. I think he knows much more than we think he does. So we carry on as bravely and positively as we can, to keep him going … but inside my heart is in a million pieces.”

—Natalie Young

The young boy is Max and this is his story of bravery in the face of a dangerous and uncertain future…

Mark Kleckner and his wife, Natalie Young, started Independence Day, July 4, 2008, playing with their four-year-old golden boy Max Spartacus Kleckner. The day ended with a stranger telling them that he had a malignant tumor in his head.

There were virtually no symptoms other than a persistent cold that wasn’t getting better, the reason behind the routine doctor’s visit that led to Max’s diagnosis. There was no cause. And there was no way they could have ever prepared for the nightmare they instantly found themselves living in.

Max was diagnosed with embryonic type rhabdomyosarcoma. Further tests revealed it had metastasized—spread from his head into his bone marrow—making it stage IV cancer. The fact that it had metastasized is bad news. The good news is that the type is embryonic, which has a better response to treatment. Max’s oncologist at Children’s Hospital in San Diego cited studies while formulating his prognosis, which in Max’s case is 50 percent survival/remission in five years.

Armed with the adult facts and the knowledge of Max’s passion for superheroes, Mark and Natalie sat close to the love of their life and explained why they weren’t going to the fireworks show at the beach that night. They explained that Max had “bad guy cells” in his head called cancer. They were going to put “good guy cells” in him to fight the bad guy cells, and there was going to be a huge battle.  This had the right effect on Max: it was exciting. With their game faces on, Mark and Natalie told Max how families are the most powerful teams, and that they would be right by his side fighting and helping him to win the battle. Two days later, Max had a semipermanent chemotherapy port installed under the skin on his chest, his “superhero port” where the superhero cells go in.

Max received his first chemo treatment on July 9, 2008, and, after a week in the hospital, was allowed to go home. But as is often the case (signs of infection at the tumor biopsy site combined with a high fever and low white blood cell count), three days later he was back in the hospital, where he received a blood transfusion and remained another week until the fever had subsided and his white cell count had risen.

This is just the beginning of the battle.

For the next year, in addition to intense chemo and radiation treatments every four weeks, it’s anticipated that Max will be hospitalized fifteen days or more each month due to the potentially life-threatening side effects of treatment. His routine will also include twice weekly blood labs, weekly Vincristine shots (an additional chemo cocktail), and monthly MRIs, CAT and bone scans. During hospital stays, a force of nature could not pry Mark and Natalie from Max’s side.

While Mark and Natalie have learned a lot about the
treatment for cancer, they are only in the initial steps of their journey with Max. Down the road, he could need a bone marrow transfusion. Other surgeries and therapy may be required if latent effects from the radiation present themselves. Stunted growth, facial hypoplasia, loss of vision or hearing and lowered brain function are all common in cases similar to Max’s.

Mark and Natalie initially posted a letter titled “Zero to cancer in 24 hours”, explaining how their world had turned upside-down overnight and thanking their ever-expanding circle of family and friends for their communication, concern, and love.

That same circle of family and friends wants to provide Max with every conceivable weapon to defeat this cancer. For Max, the most powerful medicine is the love and company of his parents, so the decision to continue working a very demanding job or to be at Max’s side throughout his treatment is a simple one, even if it means forcing the family into serious financial difficulty. Right now—as indicated by an entire kitchen countertop devoted to medication and medical paraphernalia—Mark and Natalie’s fulltime job is caring for and loving Max, who cannot continue his normally scheduled playdates or preschool/daycare because the chemotherapy compromises his immune system. If Max starts to run a fever and is not immediately hospitalized, a normal cold can be fatal.

While Mark and Natalie are optimistic and planning for the best possible outcome, they are also preparing to tackle every hurdle that is thrown in Max’s path, at any cost. As they plan to treat each day with Max as a gift, Natalie will take an extended leave of absence from work, so the family will not have the security of her salary and benefits.

When news of Max’s illness reached friends and neighbors, a dark cloud sat for days over the neighborhood. Many reflected back to a time not all that long ago when Max and his “buddies” were still babies being looked after by parents in various phases of rookie parenthood. Noting the number of similarly aged children and parents with that telling “deer in the headlights” stare, Mark and Natalie opened up their home with the invitation: “It takes a village to raise a child. Come meet the village!”

There are similar stories of community across the country, and each can probably be traced back to selfless people like Mark and Natalie, who didn’t stop with that first gathering. Not long after, the sounds of Mark’s power tools filled the neighborhood and when the dust had cleared, their front yard had been transformed into “Max’s Boma.” Natalie spent much of her childhood in Zimbabwe, and it was there she learned about Bomas: round corrals built from tightly woven piles of thorn bushes and brush to protect livestock from predators. They also act as safe places where children can play without fear of what lurks in the tall grass.

The envy of any kid who walks by, Max’s Boma has become the local hangout. Drivers sometimes stop to admire the tropical architecture of the tree house, complete with a tall, sturdy fence, swinging bridge, two slides, two swings, monkey bars, and other imaginative details that Mark constructed, not only for Max, but for all the village, who now see little Max as a symbol of strength.

Just as it takes a village to raise a child, so shall it take a village to heal a child. If you’d like to donate, any amount is appreciated and will go toward the care and medical treatment of Max Spartacus Kleckner.

Donation information can be found here: Donations for Max

Download the full article: The Bravest Superhero (PDF)