Update After Remicade Infusion #1

Mini update after Remicade infusion numero uno:

first-remicade-infusion

Many of you have asked how Brandon’s first Remicade infusion went on Monday. I think it went about as well as it could go! Praise the Lord!

His appointment was in the afternoon (strategically scheduled during the latest appointment slot they offer so he could work most of the day and then be able to go home right after) and since I was in South Carolina for my uncle’s funeral, Brandon’s mom went with him. He was given an iv and the nurse programmed the iv to infuse the proper amounts at certain intervals, in the amount that was right for his body weight. The infusion took about 2 hours and then he was required to stay for another 30 minutes so that they could monitor him for signs of allergic or adverse reactions.

The nurses all recommended that he bring a laptop/ipad/book or something else to do while he’s there, since he isn’t able to do anything else but sit while he’s being infused. When the infusion was complete and he had waited the half hour, he was allowed to leave and we were told that most serious adverse reactions occur during infusions 2 or 3 in the onboarding process.

He has his second round of Remicade in 2 weeks, and then 4 weeks after that will be the third round and last in the onboarding process before he will begin his every-other-month treatments.

I know you’re probably wanting to know… does he feel any different/better?

YES!

Of course, I’ve been the annoying wife with my questions:

“How do you feel? Have you gone to the bathroom? Does your stomach hurt? Are you tired? Do you feel better? Do you feel different? Are you breathing OK? Do your ears hang low? Do they wobble to and fro? Can you tie them in a knot? Can you tie them in a bow?”

OK, OK, just kidding! I didn’t ask if his ears hang low but I should have! All the other questions I’ve asked though… approximately 35 times each day. Anyway, when I asked if he felt any better he said “I don’t want to jinx it, but I think I do.”

How awesome is that?!

I know what you’re thinking, because I was thinking it too… Is it all in his head? Is it more mental than anything else?

Maybe. But that’s OK. Because even if it is partially mental, that helps anyway with relieving some of the stress. Because this dude has been anxious. I hope he doesn’t mind me telling you (we’ve been pretty real with yall so far, so why stop now, huh?!) but he has been. He’s had pain and that has skyrocketed the anxiety. He’s been (over)analzying every little feeling, every little twinge, and when the pain started, he really (semi)freaked out. SO, I think that when he went for his Remicade infusion, just knowing that he was on medication was a HUGE relief to him. It was like he could finally let out that breath…

“I’m gonna be OK. The Remicade is going to control the Crohn’s.”

THANK YOU for praying for him (and me!) and for checking in with us over these last few days. So far so good and we’ll keep you posted on how he does with the next round!

Take THAT Crohn’s! #boom

If you missed some of our Crohn’s disease story, you can catch up here.

 

Hard days and infusion treatments

Today will be a hard day. Today, we will bury my uncle.

Early Friday morning I got a phone call that he had passed away very unexpectedly in his sleep. I am devastated for my aunt and my cousins. The most heartbreaking thing about losing a loved one is knowing that hole they left will never be filled. No matter what happens, it will never be the same. Life has shifted course and it’s a different road we’ll travel now. The road without him.

We rejoice in knowing that he is with the Lord and that we’ll see him again. But our hearts are heavy, so, so heavy with the ache of this loss.

Empathy-vs-sympathy

What do you even say to someone who has lost their best friend of 40 years? There are no words I’ve been able to come up with. I recently watched a video on the difference between empathy and sympathy and there is a striking difference. Empathy allows for that silent agreement that there is nothing – said or done – that can make it better, but comfort in recognizing the incomprehensible sorrow that person is going through. The illustration was like this:

Empathy-sympathy image

Today I feel compelled to tell you to connect with your loved ones. It’s sad that it takes an unexpected death to prompt me to do this but life is so short. Don’t just “hug your loved ones”, connect with them. Make time to be with them. I wish I’d spent more time with my uncle.

Don’t let life pass by without making those you love feel important. Take the time to make memories with them.

Virginia-tech-college-roommates


 

This past weekend, my college roommates and I got together and went to the Virginia Tech football game. We made an oath of sorts when we graduated to get together at least once a year. To make it a priority to plan ahead and schedule time to see one another, to travel the distance between us, however far apart we may be, and reconnect. It’s been almost 10 years since graduation and we’ve been there for each other’s weddings, gotten to know each other’s kids, and shared in the joys and sorrows of life together. Because we made it a priority. We could have easily let this weekend pass us by… Because it was too much trouble to arrange childcare or travel or had other things take priority. But instead we cleared our calendars and we were so glad we did.

Connect with those who matter most. And if you’re reading this, allow me to capitalize on this moment and invite you to know Christ. He is our ultimate comforter and protector and wants a personal relationship with you. I know I’ll see my uncle in heaven and I take great comfort in that. My cousin put it so beautifully:

“I’m thankful that death is not the end and that through my faith in my Lord and Savior Jesus Christ, I will get to see my Dad again one day. If it were not for my faith, this pain would be unbearable. I pray for those of you who do not know the Lord to accept Jesus Christ as your Lord and Savior who will guide you through the painful trials of life and it will be the best decision you will ever make!”

Please join me in covering my aunt and cousins and our family in your prayers today, and in the days to come. Pray for supernatural peace and comfort to overwhelm them.

Also, while I’m asking, please pray for Brandon today. He has his very first Remicade infusion today. I’m upset that I won’t be able to be there, but Brandon has been so understanding and insisted that I go to the funeral. I’m so grateful to his mom for rearranging her schedule so she can be with him, and to my sister-in-law for helping with the boys. We aren’t sure how Brandon will respond to the treatment, both immediately and long-term, so we covet your prayers that he would have no adverse reactions and that it would be successful!

It’s been a crazy ride, this life, the last little while, but more than ever now I’m so grateful for the people I get to spend it with.

On Loss

The last week has been a blur.

Between the boys fighting “the crud” all week, trying to work from home (while playing nurse to my boys), attending a 2 day conference for work, and then giving a big presentation at work on Friday, my week already felt like it was flying by. Plus, we had plans to go to Virginia Friday evening to celebrate Thanksgiving with my family and then go to the Virginia Tech football game on Saturday.

My alarm went off at 4:45am Friday morning, I spent some time talking to Jesus, and then went to the gym for a pretty killer workout. I rushed home like usual, and began the morning flurry of activity – you know, making lunches, cooking breakfast, showering, getting ready, picking out clothes, checking the bookbags, etc – then, curling iron poised over my head, my phone rang. I glanced down and then my heart skipped a beat because I saw Mom’s picture flashing on the screen. Phone calls before a certain time in the morning and after a certain time in the evening are never a good thing. You don’t casually call someone at 7:29am to shoot the breeze.

My mom delivered the news that my uncle had passed away in his sleep, very unexpectedly, at the age of 56. Before we go any further, let me tell you that my uncle knows the Lord and is singing praises to Him on the streets of gold right now, so while we are heartbroken that his family here gets no more earthly time with him, we are rejoicing that we will get to see him again.

It’s odd. I’ve experienced loss before, but it’s been different. My first experience with death was when a next-door neighbor passed away  during my childhood. We went to his funeral and my parents did a great job of explaining things to us and making sure we weren’t scarred from the whole ordeal. The next time I experienced loss, I was much older, and it was much closer. My best friend’s dad died after an extensive battle with cirrhosis of the liver. He had had a liver transplant and we thought maybe that would be the turning point, away from hospitals and sickness, but instead, one cold December day, I got a phone call from my mom. I remember it so vividly.

I was walking back to my dorm in the cutting Blacksburg wind, and had several textbooks in my arms. I heard her say something like “Bethany, Mr. Scott didn’t make it.” I hadn’t quite made it to the door of my room yet, and remember dropping the textbooks and papers in the middle of the hall, and crumbling to my knees. Then, gasping and crying and screaming, I sat there until my best friend came running around the corner to wrap me in her arms.

I remember thinking “Not him, not now! It’s too soon! This can’t be real. What will they do? How will they go on?” This man was like a second father to me. A man I had memories with, who was the one who seated me every Sunday morning at church when I was painfully shy when I was younger, and who more Sundays than not, sat with me instead of having someone else come be “my friend.” This man took me on multiple vacations with his family – even Disney World! How loved I felt by this man, that he would think enough of me to include me in his family’s vacation plans to the happiest place on earth.

And the worst part… the worst part was that he was madly, deeply in love with his wife, and she with him. There’s not a lot that seems more cruel than to have the one you love taken from you, far too soon. My heart ached. My heart literally hurt for her, and for my best friend and his sister. I remember being held up at the elbows by my parents at his funeral. I remember struggling to breathe and feeling as though my insides were imploding.

I remember thinking, “How will they go on after the loss of their husband/father?”

Now, more than a decade later, I’m sitting here thinking about my aunt and cousins who just lost their husband/father and I’m thinking about my own loss. Not just about my uncle, but about my own father. I’ve realized that in a very unconventional way, I have spent the last 12 years grieving the loss of my dad. I grieved him when Mr. Scott died, I’ve grieved him in every little girl holding her daddy’s hand, and I’m grieving him again now, with the loss of my uncle. My dad isn’t dead, but I have mourned the loss of our relationship. It’s taken over 12 years, but I think I’m finally able to recognize this.

As I have prayed for my aunt over the last few days, I have practically begged God for His supernatural comfort and peace to overtake her. I have realized that grief is a long, slow, and very painful process. You can drown in the “why’s” and “how is this real?”s and the despair can suffocate you. I hope you’ll join me in covering my aunt and my cousins in prayer. Tomorrow, when we bury him, it will be a difficult day, but not the most difficult, because then Tuesday will come, and then Wednesday, and each day after.

Decision Time For Crohn’s Treatment and a Thankful Heart

I’ve been trying to write a new post now for a week. I can’t seem to come up with anything interesting to say. Not that this means our life isn’t interesting, I mean, c’mon, we live with two little whirlwinds. Hurricanes I call them… Hurricane Pax and Hurricane Maverick. Fitting, isn’t it?! They’re strong and ferocious little gusts of wind, who blow through a room quickly, starting quietly and ending with a roar, and when they’re gone its as if everything has been tossed in the air and left to fall where it may.

Anyway, our little hurricanes celebrated Halloween (more to come on that later), and its been raining on and off. An important marker in this stage of our lives is that we’ve not visited a hospital in the last week, and we’ve done lots of research on medications and therapies and alternative ways of treating Crohn’s Disease. You’ve been so helpful. We’ve had so many people reach out to us and give us advice, or opinions, and real life experience. Don’t tell Brandon, but I even joined a Crohn’s support forum online. It sounds a little hokey, I admit, but there’s a weird sense of solace in reaching out across the cyber waves to ask someone else going through the same thing, what they would do, or what they did. Even better than that has been all the messages and comments from people we know or people who know us through someone who knows us. We have wrestled with what to do about a long-term treatment plan, and are still trying to make sense of the best course of treatment for us.

This week, I’ve had several moments where I have felt so overwhelmingly blessed, I just have to share. I’ll start with my most recent “moment.”

Just the other day at work, a woman I work with, who just recently had a baby, came back to work for the first day after the birth of her son. Her son is still in the NICU. He’s had 2 surgeries since his birth just 12 short weeks ago. I told my coworker that she looked great – and she did – but I could see the worry in her eyes. I could see the underlying stress of navigating a hospital system, with a precious family member at the center of it. I wanted to reach out and hug her, but was afraid of tipping over that precariously balanced set of emotions, the tears threatening to flow at any moment. Instead, I went back to my desk and carefully crafted an email to her, offering a promise to pray for her, and a listening ear if she needed it. On my way home that day, I cried. I cried for her because I know all too well, that torn feeling she has. The torment of fulfilling only half the duties of wife, and half the duties of mom, and barely able to concentrate on work.

I realized how blessed I am, because I’m not sure how I would handle it if my baby were the one in the hospital. I barely held it together, and my husband is a full-grown man. I have another friend whose baby was recently in the hospital for weeks, and at one point, had a very dim prognosis. These women are heroes.

The Crohn’s Treatment We Chose and Why…

When I think about our journey, I thank God for the brevity of our hospital stays, and for the diagnosis that we have. My husband could be facing something much, much worse. Don’t get me wrong, Crohn’s is no picnic, but we are on the verge of getting this whole thing under control (hopefully!).

We found out that Brandon has not yet formed antibodies to Humira, and since his physician really (really, really, really, really, really) thinks that Remicade is his best chance at getting the Crohn’s symptoms in remission, he has decided to switch to Remicade and his first infusion will be next Monday. Brandon is more than ready to begin, and has been fighting feelings of anxiety because he hasn’t been feeling that great and can already tell that he’s headed back down the road to another blockage if we don’t get it under control quickly. We canNOT keep having pieces of his intestines removed, so you can understand his anxiety. The way his physician put it was a little blunt, and basically scared the mess out of us:

You have to be on medication that will control this. If you don’t, you’ll end up in surgery after surgery, with the eventual result of no intestines, and then you’ll be fed through a tube and never taste food again.

Well ok, then. Sign us up. When do we begin?

But seriously. We begin (well he, obviously, but I’ll be there with him and feel like this is we a “we” thing ya know) with an on-boarding round of infusions, and then we’ll settle in to an every other month infusion schedule… for life. I’m nervous for several reasons:

  1. Is Remicade going to work?
  2. Is Brandon going to respond positively or negatively to the infusions in the hours and days following?
  3. Will there long-term negative effects on Brandon’s body?
  4. Will we be able to afford this treatment… forever?

I have to say, in my life, there have been a few moments where I’ve felt like what was happening was a little surreal. Like the moment where I realized I was a pastor’s wife. What? Me? **Looks over shoulder** I never dreamed in a million years that I would marry a pastor. Is this the life I’m leading?! Wow! I feel so grateful that the Lord chose to bless me!

Another was that time that I gave birth to a second baby boy and realized that I was a MOM, to TWO LITTLE BOYS. It was so surreal. I remember thinking “I still feel 21 years old. Certainly I can’t be mother of two, can I? These precious children are… MINE?!”

Then there was that time when half a year had passed in a blur and a surgeon came walking into a hospital room (OUR hospital room) to tell us that he had just taken out 18 inches of my husband’s small intestines. Surreal. Is this our life? My husband (MY HUSBAND?!) has a chronic disease. Chronic diseases happen to other people, right? Not us. Bad things like this – like hospital visits and surgeries and injections and infusions – those things always happen to other people… right? I’m still a little in shock that this life we’ve been living, is ours.

But through all of this, all of these surreal moments and quiet cries for help, I’ve realized just how blessed we are. People have given of themselves, to us, more than we deserve and more than we can ever thank them for. They’ve paid for our groceries, fed our family dinner, made student loan payments for us, sent us cards and gifts and flowers. Sweet friends and family have given us memories, help with the boys, and my sweet sister-in-law even refused to let me pay her when she did my hair!

Brandon and I got a phone call this week that I almost can’t believe even happened. What this person said to me was so kind and so unexpected and means so much to us that when I got off the phone, we kind of had this eerie moment where we both agreed that things like that don’t happen to us. We usually do that sort of thing for other people! We feel guilty accepting help from others because we still feel so blessed. God has shown us that even though it doesn’t make sense on paper, He will provide. When we’re busy scrambling to figure out how to make groceries and bills and everything else work out, He’s smiling as He watches the UPS guy literally deliver dinner to our front doorstep.

crohns-disease-treatment

Our God is so good and I can’t help but praise Him for His goodness! My sweet family has been taken care of and so loved on, and even in the midst of uncertainty, I can rest in knowing I serve a great and mighty God.

I can’t wait to share some of the details of the last few weeks with you guys. You might not even believe it!

 

Crohn’s Awareness

Someone shared a Crohn’s story with me today, that has gone viral over the last week. The story describes a young man who has Crohn’s disease and his insisting that Crohn’s needs more awareness.

I was moved by his story for several reasons. It resonates with me. With us. Outwardly, Brandon may look fine to you. But what you may not see is that we always sit near the back, him on the end, at church, sports events, concerts, and other crowded events. Why? Because Crohn’s is a cruel, unpredictable disease that rears its ugly head anywhere.

We choose to drive our own vehicle if we’re going somewhere with anyone. Why? So we can have control over pulling over if we need to take a bathroom break.

He makes food choices, good and bad, that he sometimes agonizes over. Until this past weekend, Brandon hadn’t had a salad for months. He loves salad, but sometimes salad doesn’t love him.

What you may not see, are all the clinic visits, and the routine labwork done. When you’re watching your favorite tv show at night, we’re talking about costly injections and infusions and lab results and googling support groups and poring over Crohn’s forums.

On the outside, you see a fun, loving, handsome, able-bodied Brandon. You might not see the anxiety, or the heart-wrenching confessions of his fears.

Another reason this moved me, is this is what we’re afraid of Brandon’s future looking like. Did you know there is such a thing as people surviving by nutrition via feeding tube and never.eating.again? In a society that is so centered around food, this seems to be one of the cruelest things that could happen. Maybe I’m being shallow, but I want my husband to live a vibrant, full life, complete with food.

Thanks to us, you probably now know about Crohn’s disease, if you didn’t before. We are proud to be part of the movement in Crohn’s awareness, but sad that we have no choice but to be along for the ride.

Read this man’s story and let me reiterate and emphasize, Crohn’s is a cruel and chronic condition, and whenever you see Brandon, even if he looks fine, please continue to pray for him, because the invisible illness is very real and very present.

You can read more about our Crohn’s journey here.

A Week of Ups and Downs

This week was a bit of a roller coaster. I love roller coasters. Usually. Most of the time. If it involves Disney World. Not if it involves my emotions, or my family.

We went into the week really excited about our family photoshoot with Captured Love Photography. We had tried to plan a shoot before Brandon went into the hospital the first time this fall, but our plans were a little derailed and then after that, with surgery looming, we decided to put it on the back burner, because it wasn’t a priority financially. I’ll write more about this later but, for now, just know that we were able to schedule a date for a shoot, and the fabulous Erica was able to capture these beautiful moments of our family.

These two boys are our world.

Up-and-down-week-Delk-family-photos-boys

I love that almost 10 years later, we still giggle together.

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This baby makes my soul happy…

Delk-family-photos-Maverick-Bethany

Oh, only the heartbeat of this girl each day…

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I’ll share more of these gems in another post (they’re really all so good that I am restraining myself from Delk Family Photo Overload for you!) but wanted to share more of our roller coaster week with you.

Tuesday, Brandon went for his follow up GI Surgery appointment and was cleared to begin working again, with the very strong caution to remember that he was only barely 3 weeks post major abdominal surgery. Wednesday, my brave and handsome husband woke to his early alarm, got dressed, and hustled out the door to work. He was exhausted by the end of the day, but managed to make it the full work day.

Thursday, he got up and went back to work again, and ended up having to work late. I was really worried he was overdoing it, so soon after returning to work. During the day, he called UNC and was trying to figure out when to begin his Humira injections, as well as his other injection (the low-dose chemo medication). They arranged for him to come in for a follow up appointment the next day and suggested that his treatment plan would be changing.

Friday,during my lunch break, I drove to Target and Brandon called as he was getting out of his doctor’s appointment. He sounded so discouraged. I knew immediately that his appointment had gone in a different direction than we were hoping. He then proceeded to tell me that his GI doctor wants him to begin Remicade infusions, a drug called 6-MP, and another drug. The Remicade infusions would take the place of the Humira injections, and the 6-MP is another type of low-dose chemotherapy, and the other medication he wants to put Brandon on is for the visceral pain, which is basically like phantom pain, the pain that an amputee might feel on a limb they no longer have. Brandon has been worried over the last 2 weeks because he has felt pain, and thought that he may have another obstruction. Honestly, he was almost panicked over having this pain, and his doctor explained it this way: Brandon’s nerves in his intestines have only felt pain for so long, that that is the only thing his nerves know how to feel. This third medication is supposed to “reset” his nerves, so that they learn how to feel normally again.

Allow me to interject for a moment here… my husband has been in such intense pain for so long, that all his nerves know how to feel… is pain?! Even after the problem is gone, all his body knows is that it has been fighting itself. This thought alone is enough to make me weep. And weep I did. I put myself on mute, listening to my sweet husband recount his doctor’s appointment and then his feelings about it all, during my lunch break, sitting in the Target parking lot.

I listened to him tell me that the Remicade infusions take about 4 hours to infuse, and that he would have to take a half day off of work each time in order to go to the hospital to sit for these infusions. I wept – you know, the big ugly-cry kind of weeping – watching happy people go in and out of Target, and thinking about how sad I was at the thought that my strong, brave, handsome husband would have to strap himself into a hospital chair every other month to sit, weak and tired and defeated, to have a drug infused, on the off chance that it might work. Of course I couldn’t let him know how upset I was, and I had already used 7 Chick fil a napkins to blow my nose and wipe what was left of my makeup off my face. He asked me what I thought, and all I could get out was that I didn’t think I wanted to go into Target. I put the car in reverse, and drove back to work.

We are so discouraged. I’m discouraged for several reasons…

When Brandon was first put on Humira we were told that these types of medications were “use it or lose it” drugs. Meaning, once you get off of one of the medications, your body begins to build up antibodies to it and you can no longer use it because your body will reject it. The surgeon told us after his surgery 3 weeks ago that he was encouraged because it looks like the Humira was working.

So, let’s pause for a minute and talk about this…

Brandon has surgery in August of 2014. Was put on medication for long-term treatment in December of 2014. In January of 2014 Brandon couldn’t take that medication any longer because it made him feel so bad (extreme fatigue and nausea so bad it would wake him up in the middle of the night, and driving for work was absolutely miserable). Fast forward to the beginning of May when Brandon had to go to UNC for another scan (almost ending up in surgery then!) and was immediately put on Humira, and methotrexate was introduced at the end of July. The way we see it, Brandon was not on medication to manage the active Crohn’s for 9 months post his first bowel resection, and therefore the disease had time to manifest and cause another obstruction, then when he was put on Humira (and another round of steroids at the same time, too) it was able to control the obstruction until September. Since his surgeon saw no other places of active crohn’s while he was in surgery, we think the Humira WAS WORKING.

What we can’t figure out is why his GI doc wants to switch medications, and have us potentially lose that medication forever (remember, the antibodies? ^Read above again if you aren’t following). Plus, giving himself injections every Friday night isn’t the most fun thing in the world to do, but it sure beats having to take a half day off of work each time, to go and sit for 4 hours at a hospital, find a parking spot in the crazy parking deck (which he will have to pay for each time), AND pay hospital bills each time in addition to the new cost of this drug, which we were told could be anywhere from $6k-20k per infusion. Let that sink in for just a second. Yep, she told us it could cost up to TWENTY THOUSAND DOLLARS per infusion. C-R-A-Z-Y. Seriously.Crazy.

At this point I’m not even worried about the financial aspect of it all (the nurse is working on insurance and assistance programs yada yada yada, but our God can do anything and $20k is child’s play to him). I’m more concerned about switching medications and the lifestyle change (read: INCONVENIENCE), and how he’ll feel afterwards. Everything I’ve read so far indicates that he will be extremely fatigued the day he has an infusion, and lots of patients have said they get feverish/chills and some have to take Benedryl or other allergy medication to combat the side effects. UGH.

This is such a long post, and I’m sorry if I’m boring you, but I’m writing it for a purpose. I’d love for you to help us share this post in hopes that we get some feedback from patients with Crohn’s Disease that may have been through a similar experience. If you want to help us, please share this post with your friends to see if anyone can give us any advice. Our preference is for him to stay on the Humira and methotrexate and start the medication for the visceral pain.

I’m afraid that if we switch to Remicade and it doesn’t work, then we will have lost two of the biggest/best drugs out there for Crohns because he won’t be able to go back to Humira either.

I want his physician to see him not as just a small intestine that he has to control inflammation in, but as someone’s husband, someone’s son, someone’s father. My heart breaks at how discouraged he has been since his appointment, and I am trying not to show how anxious I am over it all. Tensions are running high and on the way home Friday night, Brandon was going to go to CVS to pick up 2 of the new medications, but I kind of panicked and suggested that we wait to talk with his physician again on Monday, because I just feel so unsettled about this course of treatment.

Maybe we’re all just a little tired, and ready to put this all behind us, but we really need some real life advice. If you can help us spread the word and get some advice from people who have experience with Remicade infusions, Humira injections, or Crohns in general, we would really appreciate it.