“Don’t Give Up!” – Max

A tube sticking out of your chest might seem scary to most kids. Most kids aren’t Max though, who was diagnosed with acute lymphoblastic leukemia (ALL) at just 4-years-old. When Max woke up from his surgery with a port placed for treatment, he wasn’t scared. He felt more powerful and transformed into IronMax!

The port gave him the power to defeat the villainous disease inside him, which he nicknamed “Sneaky Leu” (leukemia).

His parents, Michael and Kristy, developed this narrative as a way to help Max better understand his situation. Both of them had some experience working at The Children’s Hospital of Philadelphia (CHOP), so they knew about port placements and that they mildly resemble the ARC reactor in Iron Man’s chest that gives him power. Once they thought of that, it all clicked.

“It became like a rallying cry and all our families and friends started referring to him as IronMax,” said Michael. “It was the right icon to make him feel like he could do this…it’s really become a mantra of strength for him.”

Max needed to be extra strong too since he had to simultaneously fight off a fungal infection for nine months while undergoing cancer treatment. To help cope with the difficulties of treatment, he even embarked on a new artistic endeavor with his dad.

In the hospital, Max started making videos to respond to a family friend, “Uncle Brett,” who would send goofy clips to cheer up his godson. It turned into Max showing Uncle Brett his treatment routines like how his port is accessed. He even made a video to help teach other kids how to take pills at a young age.

“We started realizing that Max making these videos and then being able to watch them later was a really powerful way for him to see what he’s capable of doing,” said Michael. “Reflecting on all of his accomplishments was just another way of making him feel empowered.”

Max had a healthy kindergarten year and currently goes to the hospital every four weeks for infusions. With no hospitalizations last year, the family is hopeful that all will be well once he finishes his maintenance treatment next summer. They also recognize the importance of those who helped pave the way for Max to have an effective treatment protocol for such a deadly disease.

“We as a family have been filled with a sense of humble gratitude for the fact we live in an age where this devastating diagnosis can be treated and there’s a protocol in place,” said Michael. “You think about the families that came before to pave the way for us and we wanted to give back to the next generation.”

Trying to create useful tools for future children facing cancer is just one way they’re helping the fight against childhood cancer though. Both Michael and Kristy have held lemonade stands for several years and participate in Alex’s Million Mile. Not to mention the fact that Michael’s sister joined ALSF as an outreach specialist in Boston, a career change spurred in part by Max’s fight.

When people ask Max’s parents how they coped with their new reality, they generally reference Max’s strength over their own.

“When he is giggling on day 45 of a hospital stay and he hasn’t been able to leave his room due to a fungal infections, I just think, yeah we can cope with this,” said Michael.

The family is hopeful that Max can live a long healthy life, especially alongside his recently arrived 3-month-old sister Maren.

“Max is just a fantastic older brother, it’s kind of a new role for him but he’s in love with her,” said Michael. “It’s kind of neat to see that side of him coming out.”

Looks like being a super brother is just another of IronMax’s many powers.