Brain Tumor: A Parent’s Worst Nightmare

Allow me to tell you about my son Maddox’s battle with cancer. 

Just before Maddox’s 3rd birthday, he was taking a bath. I noticed his right hand was up against his body and he was reaching for everything with his left hand. He was right-handed at the time so this seemed very strange. I got him out of his bath and started to have him try things with his right hand, which he could hardly use at all. This obviously set off alarm bells, so I decided to take the following day off work so that my wife and I could take him to the doctor. We took him to his regular pediatrician where they did a quick run down and asked us to take him to Mary Bridge Children's Hospital in Tacoma. We immediately got back in the car and headed in that direction. We never could have imagined this being a very concerning situation, so we stopped and got lunch before arriving at the hospital. They took him for some images. We waited in our room for the results. 

That is when a parent's worst nightmare happened.

A team of doctors walked into our room. We were told, “Maddox has a brain tumor.” I remember feeling physically ill and not being able to focus on anything they told us. At that point in time, all we needed to know was whether or not our child was going to die. Within 48 hours he was taken in for his first brain surgery. They informed us everything went well. They felt as if they got approximately 80% of the tumor. Maddox improved over the next couple of weeks, getting the use of his right hand back almost fully. Unfortunately, by the 3-month mark, it completely grew back. We were right back to square one.

We tried numerous treatments to get things under control, yet nothing was working. The tumor kept growing. About a year and a half later things get even worse. Maddox wakes up from a nap unable to walk or talk. His face was sagging. My wife calls me at work to tell me they are getting in an ambulance and to meet her at the hospital. His right hand was pretty much gone at this point. They had him on massive steroids. Major weight gain. The doctors decide to try a reservoir to drain the tumor, and Maddox underwent his 2nd brain surgery. We prayed that the surgery would help, but it didn’t. Since the tumor was on his brain stem, another surgery would be too risky. Our last ditch effort was to put all of our hope into a new trial drug. And like most parents in this situation, I then began trying to find him more options. I called, texted, and emailed St Jude Children’s Research Hospital in Memphis Tennessee every single day. Got a phone call telling me he didn’t qualify, naturally I was mortified so I began peeling the layers back to find out why.

They said that if a child is receiving any sort of treatment at any other hospital, they are ineligible. So I started thinking about it, he “technically” wasn’t. We were waiting for insurance to approve the trial drug, so during those 5 days, I convinced the hospital to review his file in their cancer board meeting. The next day I Express Air-mailed all of his medical records. I tracked them and they had got there just in time. It was that night we got the call.

Dr. Frederick Boop from St Jude called us, saying he could cure our son. Before I got too excited, I asked him to give me his definition of “cured”. He said we had a 75 - 80% chance of flying home cancer-free. Now, we just had to get our son on an airplane to fly across the country. Patiently, we waited for St Jude to book our flights and we rolled the dice and went.

When we arrived they did their preliminary evaluation of Maddox. The verdict was that he could have a stroke and die at any time, so he was registered for surgery the very next morning. It was supposed to be 18-hour double brain surgery. We sat in the waiting room and at about 2 pm the surgery was complete. This was alarming. The nurses escorted us to a room to talk to the surgeon. He came in and changed our lives forever. 

The surgeon had been able to remove the entire tumor, and Maddox was cancer-free.

We just cried and cried and cried. Now, we had to see if Maddox had permanent brain damage. The next few weeks were extremely challenging. Maddox could not talk or use his right hand.  Slowly, he started talking again; and we got to fly back home 12 days after arriving. CANCER-FREE.

There are so many more details to his story. Maddox truly is a hero to so many people, he never once got discouraged or gave up. With every doctor's appointment, he faced his fears and handled them all like a champ.  He never doubted that he would eventually win.  He never let the tumor control his life. Although to this day he still can’t use his hand, he doesn’t let that stop him from living. He sets his mind on accomplishing something, creates short-term goals for himself, and eventually accomplishes it. I couldn’t be more proud.

I’ve never in my life met anyone so determined. Maddox still goes to therapy twice a week, attends school, and is even getting ready to start Little League. You just have to meet him because I can’t describe how incredible he is. I know I’m probably biased because he is mine. But people instantly fall in love with him. He is alive and thriving!!! And despite his constant and daily struggles, he just keeps pushing forward. He never lets anything stop him. I am attaching a link for a short video of his journey and some pics.  The world deserves to hear his story. Never Quit!!!

Photo courtesy of author.