Brain Cancer Round 1 — A Descriptive Essay

By Jude, Age 16

Observing a high-spirited, energetic, and intelligent three year old me, no one ever could have ever guessed what was buried deep under my thick full head of medium brown hair. Some blamed it on sin, but I trust that God truly used for good according to His will and excellence. This essay summarizes my pre-surgery condition, and post-brain surgery outcome, including my deep thirst sensation. Overall, God blessed me with blissful ignorance, and made the precise and delicate medical procedure and recovery as painless and quick as possible.

It was in the thick of winter, freezing cold, with white, glistening snow high up on my three year old legs. My navy-blue gloved hand was frozen to the thin rope of my petite brother’s sled. It was a small deep blue plastic sled with a bright yellow rope. I chugged along. I was a freight train with my strong heart pumping warm red blood as I kept going, pulling harder and harder, faster and faster. But, as my heart rapidly raced, my blood pressure spiked. Soon I could not speak. I was laid down on my back like a newborn baby going at bedtime. I felt tired and almost out of the world. I was having a partial complex seizure that turned into an absence seizure. I felt warm, and I could think, but could not utter any words. I went to throw up, but I could not turn my now weak head, which I now know contained a golf ball-sized tumor. I have little memory of the seizure, but an ambulance with its sirens blaring and bright lights flashing rushed me to the hospital, while administering me life-saving oxygen.

I woke up in a hospital bed with spiky needles in my neck, arm, hand, and foot. I was confused and cold, with a blanket thinner than a sheet of paper. I felt uncomfortable and restless, freezing and parched. As soon as my breathing tube was removed, my first words were, “I want water.” I desperately craved water, but was disallowed because, after removing my sizable malignant brain tumor, I had developed cerebral salt wasting syndrome. My water intake was rationed to a miniscule sip every thirty minutes. Physically, I felt fine immediately after the surgery. I took full advantage of my rare opportunity to watch unlimited TV and movies, and to play video games. But, as I played, I felt the discomfort of sharp needles buried deep in my now weakened body, shifting along with my every feeble movement like an overused pin cushion.

Soon my insatiable thirst for water became my main focus. I was like a lost man stranded in a blazing desert with no hidden oasis. My throat was as dry as a charred log that continued to burn in a blazing fire. To prevent my recently operated on brain from swelling, I was allowed only a pitiful ration of water and soon my desperate heart switched to miserable trickery. My grandmother came to visit me and as soon as she told me she was going to the restroom, I plotted, asking her to bring me back some water to alleviate my terrible dehydration. But, my devious plot was foiled when my lurking mother heard of my hopeless scheming.

In conclusion, while I will never know while on earth why I had that wretched brain tumor, I rest my confidence in God than He used it for good. My experience is memorable because of my pre-surgery condition, my post-surgery outcome, and my deep thirst sensation. Overall, God blessed me with ignorance, and made my recovery process as fast and easy as possible. So while I can never know why I had that horrible tumor, (and the one that later recurred) I trust that God used the experience for good

Where I Come From

By Jude, age 16

Where I come from…
Minnesota, the Land of 10,000 Lakes
A loving mother and father
A household of 6 people

I come from…
Never-ending competitive soccer
A very athletic nature

Where I come from…
The Forbes Clan of Scotland
A clan of prestigious nobility
A clan of fierce warriors

I come from…
Blood that works hard
A culture of earned strength

Where I come from…
An infinite well of creativity
Vast amounts of inspiration
And strong role models

I come from…
A life plagued with cancer
And a merciful God who took it away

Where I come from…
Resiliency

Seizure Upon Seizure

It’s been more than 11 years since Jude finished treatment for brain cancer recurrence, but his medical scares keep demanding to be part of his future instead of staying firmly in his past. Just over a year ago, Jude had a seizure that reminded me all too much of his early day seizures that were life-threatening (where he would stop breathing). I drove him to the ER, not knowing that he was already out of the seizure. As we got closer to the ER, he was apologizing to me in advance for how much the ER visit was going to cost. Since he hadn’t had a seizure for more than 10 years, his neurologist didn’t think he needed to be on anti-seizure meds so we happily avoided them. He did have to take a long break from driving, but he still managed to get his driver’s license just days after he turned 16.
It’s been so great having him drive himself to school, soccer practice and his soccer referee gigs. But, that’s all going to have to change.
This morning at 7:45 a.m., I knocked on Jude’s door to wake him up for school. He quickly got himself dressed sharply in a polo and dress pants, brushed his teeth and came down the stairs like nothing was wrong. For some reason that I can’t remember, I followed him into the mud room. I saw him with his purple leather jacket on top of his polo and dress pants, but saw him barefoot. I asked him how he was doing and he said, “Um…um.” I responded, “That’s not a ringing endorsement.” Then a second later, I was reminded how he could only say, “Mommy um…Mommy um” during the seizure that lead to his first brain cancer diagnosis. I took a closer look at him and saw his eyes were as wide as saucers and his hands were frozen in an unusual position. I brought him to the same couch I brought him to during his seizure a year ago. His eyes were now shut and it looked like his eyeballs were running a marathon under his lids. He didn’t speak for a couple minutes. Everyone else in the house was still sleeping, but I finally got the attention of Levi, who awakened Andy. Soon most of the family paraded down the stairs and gathered around Jude, sharing concerned looks. Jude soon started speaking total nonsense. He had a massive headache and was cold, trembling and tired.
After he got a nap (that I probably interrupted way too many times to check on him), he was understandably a bit frustrated, as he knows now that he’ll be put on anti-seizure meds and will have to be carted around town by his doting, protective mother. He doesn’t want to be that boy who has seizures. He wants to be that tough guy who conquered cancer and is more resilient than most because of it. The poor thing kept apologizing to me for all the worry he is going to cause me. And then he apologized for not stopping the seizure, saying, “I felt it coming on and I think I could have stopped it if I had tried harder.”

Slaying Brain Cancer (by Jude, age 13)

Have you ever fought something as deadly as brain cancer and won? Have you won such a battle twice? I have, and this is my story.

It all began when I was three. Everyone thought I was a perfectly healthy little boy, until suddenly one day, that changed. It was a beautiful snowy day and the snow was shimmering white. My mom, baby brother, and I went outside to play, unaware of the breathtaking events about to unfold.

I was playing rough outside — running, pulling a sled with my little brother on it, and throwing snowballs. This caused my blood pressure to spike, which caused me to have a seizure. This seizure caused me to not only be unable to put together a sentence, but soon would have me unable to breathe.

My parents called 911. The police arrived first and immediately administered oxygen. The ambulance rushed me to the hospital and, after a CT scan, doctors discovered a large tumor in my brain.

I was put on a breathing tube and sedated until they could perform surgery several days later. I was tough, but it probably helped that I did not know the full severity of what was going on. On the day of surgery, I was anesthetized, and then my mom carried me to the operating room. The surgeon reported that he thought he removed the entire tumor, but little did he know… .

A year and half later (when I was five), during a follow up MRI, the doctors found a smaller mass in my brain. This tumor (or, as I called it, a “head owie”) was in the same spot as the first tumor. I needed another surgery to remove it.

This second brain surgery went well. The surgeon put in 2 titanium plates and 4 screws in place of my skull. I thought it was cool and declared I was 2% robot and 98% human. After surgery, I was lively and on the hospital Xbox in less than an hour. In fact, I was kicked out of the hospital 48 hours after brain surgery because the nurse said, “there are sick kids who need their rest” and I was running/driving down the halls on toy cars.

After surgery, there was a tug of war over my brain tissue. In short order, my tumor tissue was analyzed by specialists in Minnesota, Maryland, and Tennessee.
Given that my tumor type (supratentorial cortical ependymoma), in the location it was found, was exceedingly rare, it wasn’t immediately clear how to treat me at recurrence. Doctors initially recommended proton radiation, but they weren’t sure if it was necessary. My mom even asked five-year-old me if I thought I should go to the “zap doctor” (radiation oncologist) and my reply was, “Silly Mommy, no one knows but God whether my head owie is gone. There could be some hiding on the top of my brain or bottom of my brain. We should go to the zap doctor!” After full analysis of my tumor, my doctors recommended proton radiation.

Since there was no proton radiation center in Minnesota, my family and I had to temporarily move to Indiana to go to the “zap doctor.” But, before heading to Indiana, I had to have a quick surgery to have a port placed in my chest.

The toughest aspect of daily radiation for me was not being allowed to have food or water before treatment. This was because I had to be put to sleep for daily treatment. This treatment was very frequently in the afternoon and was usually delayed even later on because of constant machine malfunctions (it broke down more than a McDonald’s ice cream machine). Sometimes, I would beg for water and not receive it and then not get breakfast until 4:00 p.m.

I do, however, have many good memories from radiation, like having my cousins visit me, getting a toy from the toy shelf from the radiation center every Friday, ringing the end-of-treatment bell, and having a party to mark the end of radiation. Another thing I loved about radiation was Panera Bread night (Jill’s House, where all the kids getting treatment stayed, was given all the leftover Panera Bread treats that did not sell at the end of the night).

After arriving home from radiation treatment in Indiana, I had to have surgery to have my port removed. Given all the times I played too hard and had my port ripped out of my chest, I was very glad to get it removed.

I am happy to say that it has been more than 8 years since I finished treatment for brain cancer. I feel proud that I overcame this very hard time and am fortunate enough to tell you my story. I am thankful that I had the best doctors in the world and was strong enough to beat this very dangerous disease. I have been blessed to participate in organizations, such as HopeKids and Make-A-Wish, that brighten the lives of struggling families. I hope that many sick kids battling cancer will read my story and be encouraged to keep fighting.

Quotes of the Day

Jude (age 13) to me: “You are a lawyer, but I’m a better lawyer.”

Abby (age 4-3/4) to me: “You are so cute; I’m going to keep you forever!”

Levi (age 9) to me: “Isn’t that blackmail?”

Abby (age 4-3/4) to me: “I wish I could marry Asher, but God won’t allow it.”

Quotes of the Day

Me to Jude when seeing him eating Nutella straight out of the container: “I didn’t buy that Nutella so that you could eat it straight out of the container.  I bought it so that I could eat it straight out of the container!”

Jude’s response to me:  “You are such a hypocrite!”