Diagnosis Day

I admire people that are amazing at remembering dates, times, places... They make it look so easy. Just ask my wife and daughter, this is not a skill that I naturally possess. So it should be no surprise that the 5th anniversary of Derek’s diagnosis date caught me slightly off guard. However, not for the reason I just stated, but instead for how the calendar happens to land this year. Normally this particular anniversary is quite easy for me to remember. Even though I usually get the actual calendar date wrong.

I typically struggle with this anniversary because the last few years we (I say “we” loosely because Angela easily remembers the calendar and event date) struggle to figure out what day to associate with Derek’s diagnosis date. I always associate it with the day after Thanksgiving. Because that is the day we took him to the ER. I will not forget that. But since Thanksgiving is always the 4th Thursday of the month, the actual calendar date changes each year. I am fully aware that there are 7 days in a week, so despite today being the five year anniversary, I was a little surprised when earlier this month Angela told me that the calendar date and the event date match up this year. This is the first year that the days of the week mirror exactly to how it was in 2015. I quickly realized that there must have been a couple of leap days in there. This calendar phenomenon most likely happens all the time, but I have never bothered to notice it. So this year as we celebrate Thanksgiving, we remember back five years ago as it happened.

I do not recall all the details, but I remember thinking earlier in the week that Derek was a little off.  His energy was lower than normal and he made mention that he had a small headache, or some pressure behind his eyes, that would come and go. The day prior to Thanksgiving (Wednesday) was the day I really noticed that he was not feel well.  Living in the north, we knew the winter snow was coming and we badly needed some new tires for our car.  So the week before we made an appointment at the dealership to get new tires installed.  Unfortunately, the hour or so we were waiting was the exact time when his stomach decided that his morning smoothie was not going to stay down. We made it to the bathroom just in time, but I still feel really bad for whomever had to clean up the purple mess.

At this point, all indications were that he was starting to getting the flu, most likely the stomach flu.  He was not very hungry and he would feel nauseous whenever he tried to eat or drink. He just wanted to lie around and he would still complain off and on of the headache, or pressure behind his eyes. Nothing that he said to me seemed terribly unusual for someone starting to get sick. So when Thanksgiving day came around, I was not surprised at all when he was not very hungry. I remember thinking that this was going to be his “bad” day and I should expect him to start feeling a little better tomorrow.

Well.... tomorrow would have been today and he was not better. All his symptoms were the same as before, but worse. I remember asking him if he had any body aches or chills, he said no. I took his temperature, and it was normal. I remember telling him that this was the strangest flu I had ever seen.  He did not like sitting upright, so I remember carrying him to his bed because he did not want to walk. A very odd request from an 8 year old boy.  I tried my best to keep him as flat as possible while I carried him.  At this point, I was beginning to get suspicious.  I did my best to accommodate his strange symptoms any way I could.  So I let him just lay around in his bed most of the morning.  Nonetheless, it had been longer than I would have liked since he had eaten anything substantial.  I decided I was going to make him some soup and I asked him if he thought he would like some. He agreed that he would try and eat.

Since he was having stomach issues, I though maybe some broth might be easier on his stomach. It was about 10:30 in the morning and with a warm bowl of broth in my hand, I walked down the steps and into his room. He told me he needed to go to the bathroom, so I set the bowl down on the floor under his light switch, walked over to his bed and slowly helped him sit up.  I began to ease him to the edge of the bed, but while I was helping him do this he had a small seizure. His joints locked up, his head cranked back, and his eyes had a glazed look as he fell back on the bed and started to slightly shake. It lasted maybe thirty to sixty seconds, no more than a minute. I had no idea how long it was going to last, but I knew in that short period of time that he did not have the flu and I needed to get him to the ER.

At that time we only had one car and Angela drove it to work. Normally this was not an issue, but I needed the car ASAP and I needed to figure out how to contact her fast. Derek was stable for the moment, so I made the decision to composed an email. In hindsight, perhaps it was or perhaps it was not the best way to contact her. Nonetheless, an email was the easiest way to communicate with her while she was at work. She could check her email and answer me when she had a free moment. My challenge was to quickly compose an email that was worded in such a way as to get her attention but not frighten her, yet still get her to come home as quickly as possible.

As I am writing this post, I thought I would look back in my emails and see if I still had that email. And sure enough, I still do! I remember my mind was racing with what just happened and I was still not sure what was the best way to get her attention. I remember after sending the email, it gave me a few minutes to scramble to get Derek and Kate ready to go to the hospital. If I would have called, I would have not been able to quickly get everyone ready to go. After Derek came out of the seizure, I made sure he was safe and I told him what just happened. I said we are going to the doctor because I no longer thought he had the flu. I was in “go mode” and I just hoped that Angela would get the email and come home soon. However, if I was ready to go and she was not there, then I was going to call. But she arrived at the perfect time.

We had two immediate problems. The first was where to take Derek. We both remembered a conversation we recently had with my uncle who said always take your child to Children’s if there is a serious problem. So that is where we decided to go. The other was Derek did not do well sitting upright and it was not easy laying down in the car. We were not out of the driveway before Derek started vomiting and his sister was about to start sympathy vomiting. Children’s was just too far away. We changed our minds and went to the local ER. It was much closer and it ended up being the right decision.

Thankfully, the ER was not too busy that day. Derek was able to get right into a room. For the same reason I wanted him to eat some broth, they could tell that he was in need of fluids. We thought he looked thin then, but that was nothing compared to later. So they hooked him up to an IV and although he perked up and looked better, he was not better. I explained to the people there that I saw him have a seizure. To this day I am not sure what they were trying to accomplish, but they kept telling me that it was not a seizure but instead he must have passed out. I kindly kept repeating that I know the difference between someone passing out and a person having a seizure, but they persisted. I was 100 percent sure they thought Derek was going to be better after getting fluids. But after he only partially got better, they started looking elsewhere. They could see clearly that Derek’s behavior was not a child trying to trick anyone, so after ruling out other possibilities, the doctor on duty ordered a CT scan. He was running out of options as to why Derek was not recovering. Whatever the case, it was not obvious and it was strange enough to cause concern. I do not really think he thought he would seriously find anything, but what he saw on the image changed his mind.

Kate and I waited in the room while they rolled Derek out to get the scan with Angela by his side. After a relatively short period of time, they came back and we waited for the results. The nurse came in and said that she was going to take Kate to get juice and stickers and that we should go down the hall to another room where the Dr was waiting. We walked down the hall hand in hand. I believe each of us knew very well that if it was nothing serious, the doctor would not have asked us to come and talk. Angela even said to me “This isn’t good.” Entering the room, confidently holding hands, he showed us the image.

I did not need to be a trained physician to see the large white spot on the image immediately looked out of place with the rest of the scan. It was obvious that what we later learned to be a golf ball sized tumor in the center of his brain should not be there. In one respect it was nice to so quickly find what was the cause of his discomfort, but also this was the very start of the next 9 months.

They ended up calling an ambulance to take Derek to Children's Hospital. I rode with Derek and Angela drove there with Kate. He had a second small seizure after we got to Children’s. This ended up being a very long night. They wanted to do surgery the same day to release the built up fluid in his brain and stabilize the pressure in his head, but because Derek had a small snack at the ER, they had to wait a few hours. Thus began a period of time that forever changed our small family.

Thankfully, and only by the grace of God, he did not have any more seizures until the very end.

I cannot emphasize enough just how much Derek trusted Jesus. Despite his young age, during his remaining 9 months on Earth, he expressed the fear of dying only once and relatively early on. Facing the reality that he probably would not see his next birthday, he chose not to waste a single second worrying about that anymore. He understood that he wanted to live what life he had left and love everyone he could and not fear what he could not control. He clearly understood that people are here for just a short time and then are gone. That is the faith Derek had in Jesus, and for an 8 year old boy, it shows wisdom way, way beyond his age. Derek’s passing was difficult but incredibly peaceful. I know that God gave Derek assurances so he had no reason to fear death. Derek believed the LORD unto the end, and the LORD counted it to him as righteousness. Absent from the body, present with the Lord. I now know this to be absolutely true.

Derek died with the Cross firmly clutched in his hand.

Derek would have been a teenager this year.

That is all for now.

Thanks for reading

God Bless