Time Out for Remembrance: Celebrating My Husband’s Life

Labor Day weekend this year marked the fourth anniversary of my husband’s plight with a brain tumor.

In 2007, Devin was attempting to get back in shape and beginning to run again. He had been an athlete in high school, mainly with basketball and soccer. He ran a lot and continued to stay in shape for a while, but when he started working in careers mostly behind desks or driving around in cars, his activity level dropped and he became a bit out of shape and wanted to remedy that.

At the time, we were coming up on our 10th wedding anniversary, and I knew that he occasionally had headaches. Looking back over the years, I could see where they were increasing in frequency and in pain levels. It seemed like he was getting headaches more often and they seemed to be more severe, like what I would say would be almost migraines. (I very infrequently have headaches – I don’t even remember having one until my late 20’s. I experience mild ones when I’m tired, or because of hormones, a cold, or caffeine withdrawal. They’re not usually anything I take medicine for, but if so, a couple ibuprofen always take care of it.) So I couldn’t empathize with Devin very well. I would tell him to take some ibuprofen and expected him to be fine. Whenever the ibuprofen didn’t help, I thought it was a bit weird, but despite continued pain sometimes, he would usually always keep chugging through life. He’s very driven and sometimes bordering on “workaholism”. Things have to get very severe to make this guy slow down!

Anyway, as he was beginning to run again, he started with a headache that wouldn’t go away. No over-the-counter medicine was helping. It lasted for quite a few days, maybe even a couple of weeks. Then it started increasing intensity. He quit running and he quit drinking caffeine in an attempt to get the pain to stop. Nothing was working. Over Labor Day weekend in ’07, my mom and sister were going to go shopping at some outlet malls and invited us to go along. (Alexis was almost 3 and Jasmine was 16 months old at the time.) I love to shop, so I told Devin that the girls and I were going and he could come if he wanted. I could tell he wanted to go – after all he didn’t have anything else going on that day and he wanted to spend time with us. But at the same time he was hesitant. He seemed a bit tired and he was in pain, and light was beginning to bother him. It was a sunny day. Despite that, he ended up going with us, with his sunglasses in tow, and reclining the car seat to snooze as we drove – the outlets were 60-90 minutes away for us.

We shopped around a bit and went home, all the while Devin was telling me his head was throbbing and getting worse. I put the kids to bed and was puttering around the house doing dishes and picking up toys before I was going to sit down and relax before bed. Devin was laying on the couch and called me in to say that his head was hurting so bad that he needed to either call an ambulance or get to an ER. He was holding his head and told me to feel it – I could see and feel that it was literally pulsating. I went and called the ER of the small hospital where we would go, just to see if they could help him if we went in. My friend Laura was working that night and answered the phone. I was so relieved to be talking to her and not a stranger! She said if the headache was that severe, to go ahead and bring him in.

I called my parents and told them what was going on and that we would be dropping the girls off to spend the rest of the night with them on our way to the hospital. The ER wasn’t that busy, but it still took forever! Devin’s head was throbbing tremendously in the ER waiting room – both inside and outside. He kept wanting me to go ask the triage nurses how much longer it would be. Knowing what we know now, we think that the tumor was rupturing during this time.

The ER doctor wasn’t much help, quite frankly. I mean, he relieved the pain by giving Devin injections of muscle relaxers and pain killers, but he wasn’t taking it as seriously as he should have and was just spewing advice about migraines and telling Devin to get an appointment to see his regular doctor.

A few days later, Devin saw his doctor. This was the second visit – Devin had seen him shortly before the ER visit, where he was also assuming along the lines of migraines. I don’t think anyone really thinks they’ll find a brain tumor. But with this being the second visit, he began to take Devin’s case a little more seriously and ordered an MRI.

It just so happened that the next few weeks were going to be very busy traveling for our family. Devin was going to be a speaker at a newspaper conference in State College, PA, about a six hour drive to the east. Then he was going to drive straight from there to St. Louis, MO to attend a good friend’s wedding. The girls and I were going on a vacation with my family to the Outer Banks, NC for a week – leaving the day Devin was driving from PA to MO. Then we’d be home for 5 days and then Devin and I were going to Myrtle Beach, SC for a long weekend business conference. Whew!

So, the MRI was scheduled for the Monday when he got back from MO and the girls and I were in NC, first thing in the morning. By late morning, they called Devin at work and told him to get to one of the hospitals that was in the town where he was working – the ER would be expecting him. He went over, not really knowing what was up, but knowing it must be serious if they were telling him to get to the ER. (The pain had greatly subsided since the prior ER visit with the throbbing and pulsating.) He was in that hospital until about midnight that night, having MRI after MRI done with different contrasts and dyes being injected. He had called me before all that began to let me know what was happening. At that point, though, I’m not sure how much he knew or if he was just “shielding” me from the exact severity of the situation. He told me they had seen something on the original MRI and needed to check it again. He told me to go ahead and stay in NC and enjoy the vacation.

As the week passed and we talked everyday, I came to find out that he had a brain tumor. It was a dermoid cyst type of tumor, which was not cancerous, thank God! Typically, dermoid cysts are found on ovaries, but they have been found in various parts of people’s bodies, both males and females. They are the result of something going wrong during a fetus’ development in the mother’s womb. Usually they begin because a cell or group of cells are misplaced from where they are supposed to be, but they continue to develop anyway. For example, dermoid cysts have been known to have bazaar things inside them, like teeth, hair, nerves, eye balls, bones, etc. Devin’s tumor was the size of a baseball, between his skull and brain – smashing his brain actually. His was primarily a really big hair ball (blond hair!), that was surrounded by a mayonnaise-like substance and was contained in a sac-type thing. Evidently, a hair cell got stuck under his skull when he was developing and it continued to grow on the inside of his head and the mayo-substance was a natural reaction from the body in guarding against the irritation of the hair. In Devin’s case, his tumor ruptured, so there was mayo-substance all over his brain and through the optic nerves for the eye. They had to do surgery to remove everything. If any material was left, there is a possibility of the tumor re-developing. They considered going up through his nose, but it was too messy and a vein was in the way. So a craniotomy was scheduled a few weeks later, after our travels were done, just days before his 30th birthday. We were warned that the rupturing of a tumor in or on the brain can cause seizures or strokes, but since it didn’t happen at the time of rupture, he was probably okay until they could do surgery. It wasn’t an emergency.

We got through the surgery and recovery. However, since the surgery, his left eye is damaged. The surgeon was very aggressive and rough with scraping the optic eye nerves, trying to get all the mayo-material out. His left pupil stays dilated larger than normal, the eye ball will only move from the center to the outside but not center to inside (toward the nose), and the eye lid will only open half-way. He still suffers with regular headaches and wears prescription sunglasses during the day every day. Since the nerve function has not returned in four years, the prognosis seems like this is how his eye will remain, unless God chooses to intervene with a miracle.

Although Devin has handled all this with a lot of grace, I have seen his suffering and the social and mental anguish this has caused him. His self-confidence has waned. He is self-conscience, especially when meeting someone new for the first time and wearing sunglasses inside or at night if he’s not at home. Many women look at him like he’s “shady” and people have said that they thought he was trying to have some sort of “Joe-Cool” look, which is not the way he would choose to roll. He avoids going to stores after the sun has set for fear that they will think him suspicious like a robber. Something that is not imperative, but still sad, is that he can’t see 3D movies. My heart hurts for him with these ongoing issues. I hate that people would see my husband as shady or cheesy and that he can’t enjoy the simple pleasure of 3D and for his physical pain. In my eyes, he is the same handsome, strong, confident, driven, kind, loving man prior to surgery. I thank God for his life and that God protected us from things being even worse than they are. We continue to pray for a miracle and God’s grace for the interim.

This is a photo of our family the day before his craniotomy:

This is a photo of Devin & the girls on our recent trip to the Outer Banks:

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One thought on “Time Out for Remembrance: Celebrating My Husband’s Life

  1. Carrie Smith-King

    Devin was always an awesome kid growing up. I have suffered pregnancy losses too Kristen. GOD will work the pain out of us and replace it with blessings…I have two boys, finally after 3 failed pregnancy's. Let Devin know that just because he may be a little different on the outside, does not mean he has to be any different on the inside. That he is still that strong beautiful man you fell in love with and that is the father of your precious girls. Encourage him to tell people what happened to him so they too can see that just because he has to wear those special glasses don't make him a bad person, but truly a special person, because he survived a HUGE brain tumor and that you could of be a single mother. But your not. You are a mother and a wife of a brain tumor survivor and proud of it! Much love girl…to you and your whole family! May GOD continue to bless you and enrich your lives!

    Reply

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