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‘Adapt and Overcome’: Maddox in Maintenance

February 27, 2017
6 min read
Maddox and his family

Maddox’s mom Geri, little sister Danika, and dad Brad pose for a photo with Maddox during a St. Baldrick’s event.

You might know Honored Kid Maddox — or Maddy, as his mom calls him — as the 10-year-old cancer survivor spouting off words like “dexamethasone” in our latest campaign videos. Maddox’s childhood changed drastically after he was diagnosed with leukemia eight years ago. Now, he’s doing everything he can to take his childhood back from cancer — but, as his mom Geri explains, life in remission hasn’t been easy.

In 2010, after months and months of intense chemotherapy, Maddox was in remission.

He had one last phase of treatment for acute lymphoblastic leukemia (ALL), and it was meant to keep him there.

Maintenance phase.

It was a gigantic step for us towards some sense of normalcy.

This phase allowed Maddy to have play dates with other children again. It allowed us to go to the playground and out to restaurants, and resume many activities that were previously off limits for Maddy’s own protection.

This provided us with more opportunities, but the reality was that while Maddox was in treatment, we had to continue to be very cautious of his exposure.

He could be a kid again — but only under extraordinary circumstances.

The chemo compromised Maddox’s immune system, so we did our best not to expose him to any germs. We practically bathed the kid in Purell whenever we went out.

Maddox Slide

Maddox gets ready to go down the slide during a day at the park.

We didn’t take vacations or trips that required any air travel. Getting on a plane where there were too many germs in a confined space was not an option. We did, however, allow ourselves the occasional road trip to visit family and friends — as long as it was a short drive.

On those trips, I had to pack all of Maddy’s chemotherapy drugs and syringes, masks, and gloves. We also had to be sure to bring all of Maddy’s medical records, and a letter from the clinic explaining Maddy’s chemo protocol just in case he got sick on the trip and had to be admitted to the hospital.

As you can imagine, my checklist before getting on the road was not your typical one.

When most people travel, their biggest concern is making sure they pack enough clothes. I had to make sure I didn’t forget my son’s chemo.

Eventually, packing up all that chemo gear became part of the routine, just like packing his toothbrush.

Maddox had a mediport — a device placed under his upper right chest that was used to administer the chemo. We couldn’t risk the mediport getting hit by any balls or sporting equipment, so Maddox had to avoid playing any contact sports.

To prevent the mediport from getting infected, he was also advised not to swim in the ocean or public pool.

One day, we took our family to the beach. My husband and I held Maddox’s hands as we let his feet and legs feel the ocean, being so very careful not to let the waves and water reach above his waist.

He may have been in maintenance, but we had to protect the mediport.

Maddox draws with chalk

Maddox gets artsy with sidewalk chalk at the playground.

Back then, we longed for the day when Maddox could just dive right in and play in the ocean without a care in the world. As Maddox watched all the other kids frolic in the water, I know he must have wanted to do the same.

But he never let it get to him.

For that moment, despite the limitations, being at the beach on a beautiful summer day was more than enough for all of us.

One small victory at a time. That’s how we would get through this.

And then, there was a not-so-small victory.

Maddox was finally able to go school.

No longer were we isolated to keep our distance from “civilization” in order to keep our son safe. It was a freedom that we held with great appreciation.

Maddox was where he was supposed to be — in school like every other “normal” kid.

Maddox School photo

Maddox smiles for his school photo.

While this opened up a whole new wonderful world for us, there were still many precautions we had to take.

Before starting school, I brought an outline with me that detailed Maddox’s restrictions. It informed the teachers to make sure that Maddox didn’t play any contact sports, that he didn’t play in the grass or handle plants and soil, and to make sure that Maddox often washed his hands.

As I went through this laundry list of precautions, I kept thinking to myself, “Wow, this is so much to ask of these teachers.” This certainly was not in their job description.

I felt my eyes well up as I heard myself say, “Maddy can’t do this. Maddy shouldn’t that. Please be careful of this. Please make sure he does that.”

Hearing all of it out loud just made our circumstances even more real. Still, I knew that I had to push all of those thoughts and worries aside so that I could truly appreciate this significant milestone.

Adapt and overcome — those are words our family lived by while Maddy was in treatment. For three and a half years, that was our way of life.

Maddox and his sister, Danika

Maddox and his sister, Danika, enjoy a day at the beach.

Maddox finished his treatment in August 2012. After several years of not being able to play sports, Maddox is now quite the athlete, enjoying basketball, soccer, and football.

And he’s a natural swimmer. The first time I watched my son freely play in the ocean was a beautiful moment. He was fearless in the water.

There was finally nothing holding him back, and that was truly something to celebrate.

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