Most kids just started summer break and are enjoying the fun and freedom that comes with it, as they should. Kade, unfortunately, received some devastating news a few days ago and is now preparing for the biggest battle of his life. One that no kid should ever have to endure. Kade has a brain tumor that will need to be surgically removed.

Now let me back up a bit and tell you how we got to this point of discovering the brain tumor. For the past few years, Kade would tell me about a “weird feeling” he got sometimes. It was really hard for him to describe the weird feeling but it wasn’t scary and it didn’t hurt. We tried to pinpoint when the feeling would happen to figure out what was causing it but there was no rhyme or reason to it. I thought maybe it was nerves or anxiety but Kade insisted that it wasn’t. About a year ago, Kade started asking me to describe what déjà vu felt like…not really a strange question if you know Kade though because he is extremely smart and inquisitive. He told me his “weird feeling” kind of felt like déjà vu. We went about our busy lives not thinking much of it since it didn’t really seem to bother Kade.

This past January, Kade told me about a couple of incidents at school when his friends, classmates, and teachers noticed him acting strange. One friend told Kade that he spaced out for a minute and then started talking gibberish. Kade couldn’t remember it at all though. A month or so later, Kade told me it happened again and a teacher noticed. She tried to get him to go to the nurse but he was embarrassed and refused to go by brushing it off as nothing. By this time, I started asking Kade every day if he had anymore “weird feelings” at school. Most days he did but they only lasted a second or two and he was fully aware during those moments.

Then one afternoon over the weekend, Kade and Bo were outside playing basketball at home. They were having a blast as they always do. I was in the kitchen when Bo came into the house to tell me something was wrong with Kade and that he was acting weird. I looked out the window and Kade was dribbling the basketball. Looked totally fine to me. I asked Bo to explain what he meant…he told me that in the middle of playing a game, Kade froze up and was staring into the distance. Bo tried asking him what was wrong but Kade didn’t answer. I called Kade into the house and asked if he was okay. Kade told me Bo was being dramatic and he had no idea what he was talking about. But then he laid down on the couch and, within a minute, fell right to sleep…in the middle of the afternoon. Something I don’t think he has ever done in his entire life.

The last incident occurred a few days later. Kade is in the Civil Air Patrol, the civilian auxiliary of the U.S. Air Force. He wants to be an astronaut some day so he decided he needs to learn how to fly and get his pilot license ASAP!

During the Civil Air Patrol weekly meetings, the cadets practice formations and drills. While Kade was in drill formation, he froze while everyone else was following orders. Kade is a big time rule follower so this incident really caught my attention. The other cadets assumed Kade was tired and just not paying attention. After asking him if he was okay, his flight team ended the drill and moved to another area to sit down. When I asked Kade about it afterwards, he only remembered everyone asking if he was okay.

I knew something was wrong but didn’t know what to do next. The next day, I was talking to my mom on the phone and explained all of these incidents to her. She was stumped too but said, “I wonder if he is having seizures?” It became clear as day as soon as she said that. I googled “déjà vu and staring episodes”…absence seizures was the first link that came up. I immediately got him in to see his pediatrician who then referred him to a neurologist. He had to wait a month to be seen in her office but she suspected focal seizures. Kade underwent a “sleep-deprived EEG” which is a test that measures electrical activity in the brain. During the test, I was told to lay next to Kade in the hospital bed so he could relax and fall asleep for a few minutes (this was after many other failed attempts to induce a seizure). When they woke him up, Kade immediately had a staring episode (a seizure) and was staring right into my eyes but wasn’t there. It was one of the scariest moments of my life. When he came out of the seizure, he didn’t remember any of it and fell asleep as soon as we got in the car. We also learned that the weird feeling of déjà vu Kade had been experiencing for years is called an aura. It’s a feeling some people get immediately before a seizure. Kade also had another EEG a few weeks later and spent 2 days in the Children’s Hospital so they could monitor his brain activity over an extended period of time. Kade was really bummed to have to miss his end-of-school party for that EEG.

Kade began taking an anti-seizure medication but had a bad reaction to it that caused him to have itchy rashes. He is now taking another type of anti-seizure medication that has decreased his aura’s and seizures from around 15 per day to only 1-2 per day.

On Kade’s last day of school, he had a brain MRI after his graduation ceremony. He had to have his braces removed prior to this particular MRI as well. A few days later, on a Friday, I received the phone call while I was at work…Kade has a brain tumor that is putting pressure in an area of his right frontal lobe and causing him to have seizures. I cried like I’ve never cried before. That night, Bo played in his championship baseball game. I was fighting back tears the entire game. Ed and I decided it would be best to wait to tell Kade (and Bo) until we had more information and a game plan. After a few weeks, it was time to meet a neurosurgeon at Duke Children’s Hospital. That morning, I gave Kade the news and told him we were taking a road trip. At the appointment, we learned his tumor appears to be a Dysembryoplastic Neuroepithelial Tumor (DNET). DNETs are rare, benign, and slow-growing brain tumors. Kade was incredibly brave and asked the surgeon to tell him how the surgery is done. He didn’t even flinch when they explained he will be asleep while they cut out a section of his skull to remove the tumor and the small area of his brain surrounding it. Kade then asked if he would forget anything. The surgeon told him it is unlikely the surgery will affect his speech or anything like that because Kade is right-hand dominant and, therefore, the left side of his brain controls those important functions (tumor is on the right side). However, there are lots more extensive tests that will need to be done to map out the functions of each area of his brain so they can be sure it is safe to fully remove the tumor.

We decided to see another neurosurgeon as well for a second opinion and the message was the same. Over the next few weeks, Kade will have lots and lots of appointments to prepare for his surgery. The surgeon expects to have all of the information he needs within the next month to be able to operate and remove the tumor. There is an 80% chance of decreased or no seizures after the surgery but Kade will still need to stay on anti-seizure medications for a while after until it’s safe to find out. He will be in the ICU for a day or two following his surgery and then will move to a recovery room for about a week to monitor for swelling and infection. He’ll be assessed to see if there is any change in his memory or cognitive functions and, if so, will begin therapy. We’re hoping to get the surgery over with as soon as possible so Kade can begin his recovery and hopefully have a little bit of his summer left to enjoy and have fun doing normal kid stuff.

We really have no idea what to expect in terms of financial impact. We have great insurance, thankfully, but the medical bills for all of the MRIs, EEGs, lab work, neurologist/neurosurgeon visits, and hospital stays have already begun rolling in and it’s a lot. Duke Children’s Hospital is about 2.5 hours from us so every visit ends up taking an entire day and lots of gas. Ed is still working in DC while we’re here in Charlotte so it has been extra hard for me to juggle all of the appointments and make sure Bo and our dog are taken care of.

We’re hoping for a successful and smooth surgery but also know that, regardless, Kade will continue to have many appointments immediately afterwards and in the years following. Kade is so incredibly smart, a straight-A student every year, and has BIG dreams…we’ve talked about how life isn’t easy so he needs to work harder than everyone else to come out on top. I’ve even asked his teachers to be hard on him (shh, he doesn’t know that!). I guess this is just one of those life challenges to prepare him for something even greater down the road. Kade has the best sense of humor and loves to make people laugh. I’m sure he’ll have some cool stories to tell after all of this.

Please keep Kade in your thoughts these next few weeks. We appreciate even the smallest donations towards Kade’s medical care, as every bit helps. Also, Bo is very worried about his big brother. He has always been very protective of Kade and looks up to him so much. Bo gives Kade a hug before and after all of his doctor appointments. They are best friends and just want to play and have fun together. This has taken a toll on our whole family so all of the encouraging messages and people already reaching out with well wishes has meant a lot! I will do my best to post updates here as well.

Thank you!