#KevinStrong

What is #KevinStrong?

I started a hashtag for my son, who was diagnosed with a brain tumor and has had major brain surgery.

What do I want to do with #KevinStrong?

After my son is healed, I want to reach out to other parents dealing with the stress that Kathy and I are dealing with. I want to encourage them and shower them with uplifting love and support.

My days are blended as the fog still is surrounding our family. Sometimes, we don’t know how we will react or what will come out in certain stressful situations. I have decided to recount what has been the worst thing that has ever happened to me or my wife.

Don’t judge; this is therapeutic.

Our Story

Kathy Quimby became Kathy Moore on June 20, 2003, because of what can only be described as a poor judgment on her part. She was valedictorian of her high school and has a Bachelors of Nursing from Illinois Wesleyan University in Bloomington, IL. She has a Master’s Degree in Nursing Informatics. She fell in love with a guy who barely got out of high school, sold batteries, was obsessed with the Texas Rangers, and had a 4-year-old daughter named Ally. Needless to say, she could have done better.

Kathy is a hero. She supported my career change when it was a risk, and she was by far the breadwinner. We didn’t have a lot of money, and she had to trust I knew what I was doing. Yet, she believed in me and knew that I wasn’t happy where I was. In July of 2005, we had our oldest son Ryan. The plan was to wait about 15 months after he was born and try for one more. That was the plan…………. but when Ryan was about 11 months old, I had him in the front yard toddling around. Kat (what I caller) stepped out on our porch with the news that things were being moved up. Yep, she was holding a pregnancy test, and we were having another one.

Kevin Daniel Moore (Named after his uncles) was born on January 8, 2007. The baby of the family, he was also the most laid back. Nicknamed, “Crash” he had the most scars of anyone in our family before he was 10. Multiple sets of stitches and bumps and bruises, we were afraid CPS might be having us monitored. He once climbed 20 feet to the top of his elementary school to get the balls on the roof when some older kids dared him. It’s not that he got on the roof; it’s how he got on the roof. He shimmied up a pole like a monkey near the gym. Had he fallen, he most likely would have been severely injured if not killed. Even the police were impressed with how he got upon there. (Mind you, this is a kid who doesn’t like Six Flags because he is afraid of heights and won’t ride the roller coasters)

How We Found out

June 4th: Kevin starts complaining he has a headache. This continues through the weekend with us giving him Aleve, Tylenol, etc… He wasn’t hurting real bad; he just had a headache.
June 7th: Kevin starts morning training and workouts for high school football. At night he is rehearsing to play Sven from the musical Frozen. Headaches are still happening; we are thinking of stress and long days.
June 8th: I worked the Rangers/Rays game. Those are late nights and when I get home, Kevin is asleep with my wife in our bed. She explains that he is still having headaches. Now we are thinking migraines. (Our son in law has them) The plan is to take him to Care Now the next day and let them check him out.
June 9th: Kathy takes Kevin to Care Now. The doctor gives him a shot for pain and goes back and forth on whether we should go to ER. Finally, the doctor thinks it can’t hurt to go check it out and maybe get a scan. An ER visit is much the same. Doctor thinks it is a migraine as well since he isn’t having any other symptoms. But let’s do a CT to rule out everything. I head home to feed the family while Kathy stays at the hospital. (I had gone up there to bring her some things since ER visits can be hours) While standing in my living room my phone rings and it is Kathy. I know this can’t be good. Either the scan showed something, or Kat needs me to bring her something back up to the hospital. I answer with a simple, “hey.” Kathy says, “It’s a brain tumor”.

My world is now forever changed. It’s fog after that. I think I posted to pray for my family. I didn’t elaborate because I was headed back to the hospital for more information. Jamey Newberg texted me before anyone. “You ok”? Unfortunately for him, he got the news before anyone else. It’s not really fair to a guy I consider a friend, but we aren’t buddies. He was concerned and then got that crap unloaded on him. His response was perfect for the moment. I can’t imagine how he must have felt.

Our Reaction

I need to be honest before you proceed any further. This goes to a dark place. A place that I pray nobody has to ever go.

When you find out your 14-year-old son has a brain tumor, you can’t help but think about “it.” “It”, is the possibility that a boy who is about to enter his freshman year of high school, might never graduate. The despair that comes with that thought is like nothing I have ever even imagined. Don’t get me wrong, there are millions of kids around the world who do not graduate high school because of illness or tragedy. But none of them is my baby boy.

His Reaction

It’s not fair that the boy who is sick, is more worried about those that aren’t. Kevin took the news better than any of us. He never let on that he was scared or upset at all………….. until the night before the surgery. I was out taking care of the rest of our family, but wanted to drop by the hospital and see him before heading home to bed. Kathy, (who refuses to leave his side) was in the hallway crying. This is hard for me because she is a former ICU nurse and has kept her composure the entire time. “He admitted he is scared,” she said. But the worst part was I didn’t hear her tell me what he said.

(Grab a tissue) Kevin was dealing with nerves and finally admitted to his mother what he was feeling. “I am afraid that God wants to take me and I am not sure I am ready to go”……… He is 14 years old! The next morning I was kissing him and crying while he was heading to surgery. I didn’t know he had said that. When I found out during his surgery that he said those words, I lost it. Did he think I was crying and kissing him good-bye? I was in a bad place.

Where We Are Now

Kathy and I have cried more than you can ever imagine. I am actually in awe of the amount of tears the body can produce. We are people of faith, and we have prayed like you can’t imagine. The outpouring of love has been amazing. We are receiving more messages of hope and love than we have time to reply to.

Kathy and I have held each other and sobbed uncontrollably when out of his room. I have never cried like this in my 53 years. My 14-year-old athletic son had brain surgery. He is done with football and may not ever play sports again. He really liked track and was wanting to pursue pole vaulting. (He had left baseball a few years ago to his old man’s disappointment) I can live with him not being in sports. I want him to grow old with me. Here is where we are.

June 11th: Kevin had a 2.5 hour surgery to remove the mass that was in his brain. My wife’s daily update. “Surgery is over. Optimistic about what surgeon shared but a little odd. No clear obvious tumor. More a tangle of blood vessels, like a cavernoma, but not exactly what he’s used to seeing for that. Like some arteriovenous malformation. Some tissue wrapped up in the vessels. Will be waiting for pathology. Couldn’t get it all out because in sensitive area but said he got what he needed. Will be serial scans after this to track and make sure all looking ok. Now is still a critical time to pray as we wait to see how he wakes up and his neurological assessment since working in the sensitive area”.
June 12th: My wife’s daily update. “Today has been a little tougher for us all. Yesterday we saw continuous small improvements. He slept pretty well last night. But today he woke up frustrated. Indicated (through series of yes/no questioning) that he wants to be better. I know his sense of time is messed up and he’s very frustrated he’s not back to normal yet. Yes, it’s only one day after invasive brain surgery, but we’re frustrated and scared too. Doctors don’t have the answers we want them to have. MRI looked good (and clamping the drain in the brain), but there are no answers on when he’ll get movement back on left side. I know this is touchy stuff working in that part of the brain, but I don’t think I expected it would take this long. And we heard mention of ‘weeks’ which is discouraging. Kevin before/after surgery has still indicated that more than anything, he wants to come back and be in the play he was supposed to perform in next week. He got me to get my hopes up. But am realizing today that is not in the cards. At least for now there is no miraculous fast track to recovery. Slow-moving. He’s young, which should help. But please keep praying, don’t stop. We covet your prayers! God is good and is hearing your prayers”.
June 13th: Kathy updates us again. “Yesterday was one of the most difficult days I’ve experienced. Kevin was miserable, not communicating well, didn’t look good. It was basically what I expected Friday to be like after surgery. But he looked so good on Friday that it was hard when he seemingly “backtracked” on Saturday. But really I know it was likely just a rough day and we’ll have those sometimes, and days 2-3 after surgery are always worst for swelling which for the brain is not fun. They started the steroids back to help the swelling and Precedex to help him relax. And nursing care, y’all, makes such a big difference. Shout out to all the amazing bedside nurses in the world. Shift change last night brought us an awesome dedicated, proactive nurse who helped so much too. And for me personally, my CG Girls helped me SO much yesterday at just the time I needed it. Today, Kevin is still dealing with the same things: general frustration at not being back to normal, difficulty with speech, inability to advance diet, and left side not moving. But he looks so much better today than yesterday, but when I wake him, he is back to using some basic sign language and responding. And I’m super excited that they’ve ordered PT/OT/ST (therapy) consults today. Keep the prayers coming! Thank you all”!!!
June 14th: Kathy’s update. “Wow what a day…Kev was restless last night so my watch says we only slept 3 hours. Started with OT at 9a. Worked on sitting on the side of the bed for the first time. I had to hold him up and remind him to hold his head up. Was showed some exercises on his left arm: deep pressure holds to remind the body it’s there, and regular range of motion exercises. Then PT at 12p. Side of bed again but for much longer. Working with him to self-correct: trying to get him to hold head up, straighten back, try to use muscles to shift to right when body naturally taking him to left, etc. He got super upset 1/2 way through, crying hard and said his first full sentences, “I don’t want to feel like this” and “I want to lay down.” Heartbreaking, but I kept explaining how great he’s doing, how much progress he’s made, and how this is strengthening him to get back to normal. He did start the panic can’t breathe feeling almost near the end, but it got him to self-correct by doing his deep breathing. He counted down the last 10 seconds (and I teased him that he cheated since he counted way too fast) . 1p was a follow-up MRI after having a ventricular drain in the brain clamped for 48 hours. That’s never fun, but he got through it. And I was excited to see him move his left leg a few times during the exam (not to command), but any movement is a start! Exhausted after returned to room, but still had a lot to go. IV needed to be replaced (2 sticks). MRI came back good, so I got the ok for NP to pull his ventricular drain. Unfortunately, after stitches were removed and before pulling, I found that the loop-stitch left for a closing hole somehow disappeared. Poor baby had to have 2 stitches put in to close the hole, without anything to numb… since he was extremely restless and stitches already cut, he couldn’t wait for Emla cream to numb. It killed me to hear him scream. Without a doubt, he felt we put him through absolute torture today… start to finish. But I saw movement: I heard sentences, he started therapy, the drain is out, I got hugs, and he told me he loved me…. these are the things I hold on to today when helping him walk through the worst of times. Little bits of progress”.

Now we wait for pathology results and pray that gaining movement is the only obstacle we are facing in the days, weeks and possibly months to come.

Once my son is better, I want to reach out to people who are experiencing this despair. I want to send them messages from their heroes or even strangers. I want prayer chains to find them and lift them up. If you know someone who is dealing with something similar to what we are, use the hashtag. My family will pray for them, and I will try my best to reach their favorite sports hero or actor, etc…..