Today marks the one year of the day that we found out that Derek had a brain tumor. (We found out the day after Thanksgiving. Last year that day was on the 27th of November, so I am not totally sure what day is the "real" anniversary. But I am sure this is the day we will remember.) Today was the day he was first diagnosed. It is so hard to believe that it has been a year from when this all started. Those first couple of days and weeks were just a whirlwind.
In case anyone might not know how we figured out that Derek had a brain tumor, I thought I would give a quick recap. (it turned out to be a long recap)
A little background, Derek was an extremely healthy child. He rarely, if ever, got sick. Honestly, he might have only had a slight cold or runny nose maybe a few times in his life.
About two weeks before he was diagnosed, or maybe around the middle of November, he started to mention that he felt some pressure behind his eyes or maybe a slight headache. At first it was hardly anything and after resting for a moment, the pressure would go away and he would be back doing whatever he was doing. But he started to mention the pressure behind his eyes a little more each day. I gave him a small amount of pain relief and a little rest and once again he would go back to his life.
After about a week or so of this the pressure was getting worse. My initial fear was that he was starting to get headaches like me. And I was worried that his headaches were starting so early in his life! This was very concerning for me. As I did not want any of my children to go through life with headaches similar to mine. I would do nearly anything to make sure they did not have headaches.
But then the pressure behind his eyes started to come with an upset stomach. Anytime he would eat he would feel like he needed to vomit if he sat up. It seemed like he was getting the stomach flu. (At this point a brain tumor was not even on our radar.) He was so strong though. At no point did he complain or cry or throw a fit, he just realized he was sick and did what he had to do, that was rest. The "stomach flu" kept him from wanting to eat or drink much that week. I don't blame him, every time he would eat and then sit up, he would feel like he needed to puke. So he really wanted to just lay down. Monday and Tuesday of the week of Thanksgiving he was able to function, but he was not doing super great. By Wednesday, he just wanted to lay down all day. Even getting up to go to the bathroom would make his stomach upset. I ended up carrying him horizontally when he wanted to move. But it still seemed like the flu. Thanksgiving day Derek mostly just rested. He did not eat any food and we left him alone to rest. I expected Thanksgiving was going to be is "really sick day" and then I hoped he would start to feeling better on Black Friday. But that did not happen. He felt just as bad the day after Thanksgiving and that was when I started to wonder if this was something other than the flu. I started to question him if he felt any other flu type symptoms. I asked him if he felt bad beyond the pressure or stomach and he said no. He did not have a fever nor did he have any body aches. So I thought that was strange.
I normally don't take my kids to the doctor because of a little sickness. First off, it costs me a fortune to take my kids in each time (the last time we had to take Kate in it cost us $2000.) yet they always get better without the need of a clinic visit anyway. But by Friday, I was getting really worried and I had made up my mind to take him in. He was resting on his bed in his room. I had a conversation with him and we discussed that since he did not eat on Thanksgiving and that he was not able to keep food down that we needed to try and get something in him. And of course he saw the logic in that. So we talked about what was the best option and we agreed on broth. We also talked about going to the doctor after Mom got home and he was okay with too. I went and made some broth and I was going to feed it to him in the most horizontal way possible. But when I brought the broth down to feed him, by some miracle of God, I just happened to be in the room when he had a very small seizure. It may have only lasted a minute at most, but I recognized it immediately. At this point I forgo the broth and told him we were not going to wait for Mom to get home from work, we were going in right now. This confirmed to me that whatever it was, it was not the flu, but I still had no idea what it was.
I did not want to scare Angela, so I tried my best to word the email to Angela the kindest, yet "please come home right now" email that I could. Here is the email that I sent her.
"We might want to go into the doctor. I am not totally sure but he might have has some kid of mild seizure. I was down there getting him some food and he said he needed to go to the bathroom, but he kind of locked up his joints and cranked his head back and had a very glazed look in his eyes. He was not too responsive for about a minute and he is still pretty tired. I was bringing him down some soup,
What are the chances that you can get me the car?"
Well, bad grammar and all, my best attempt at a mild email was not very successful in keeping Angela from getting worried, but it did get her home fast. (But honestly, how can anyone communicate a message, that our son just had a seizure and we need to go to the emergency room right now and not have any mom get really worried.) I did not wait for a reply but I got Derek and Kate ready to go while I waited for Angela to get home, and boy did she get there quick!
My Uncle Bob is a paramedic and said any time your kid is really sick take them to Childrens. So that is where we were heading. But in the car he had to sit vertically because there was no room to let him be horizontal. So by the time we backed out of the driveway and got about two houses down the block, he had puked 3 times. We knew we needed to go to the closest ER.
The closest ER is only about 4 minutes aways, so we got there fast and they saw him right away. They got him in a bed and allowed him to lay down. They started to get him some fluids and after a while he started to look good again. But he still did not want to sit up. We were at the local ER for a long time, maybe 4 to 6 hours or more. During that time I told them he had a mild seizure, but they did not believe me, they said that he might have fainted or something. I insisted it was no faint. After running a few tests they came up empty and they finally decided to put him in a quick CT scan. In a few minutes after the scan the nurse came in and took Kate and the ER Doctor walked us down the hall. Walking down the hall, I leaned over to Angela and I said, "this is going to be bad". At that point I never imagined Derek would not be here one year later.
He told us that Derek had a golf ball size tumor in his brain. He would need to go to Childrens because the local ER was not equipped to deal with this. The nice thing was the ER doctor did his residency at Childrens so he knew everyone there and he personally called ahead and told them Derek was coming and to be ready. We told Derek about it and we got on the next ambulance that was available. When we got to Childrens, they wanted to do surgery right away because the pressure in his head was about 10 times that of a normal person. However, Derek had a small amount of food at the ER, so they decided to wait about the 8 hours or so, so surgery would be safe. It ended up being good because it allowed the doctor team to come up with a good plan.
To the best of my memory, that was how it all began. Derek was so strong through all this. Never any fear. Mixed in with the news no parent ever should hear, the blessings began with so many people helped us right from the start (even though that first night went really late). I say this was the hardest thing we had to go through as a family, but at the same time, there has never been a time in my family's life that we have been blessed so much. I thought I knew what it was like to trust in God in theory, but after living through this, I now know what it means to trust in God. We are living proof that He does provide.
Thank you to everyone who did anything.
It was not easy to write this and relive it again. Sorry for any typos. Sometimes I was typing through tears.
Thanks for reading,