One Week

If the first 7 days leading up to surgery were overwhelming, this last week has been just as much, but on the opposite end of the spectrum. 

It is no secret that 2020 has not been the best year in terms of politics, racial injustice and that little thing called Covid-19. We have seen some of the worst of our humanity, our country has become more divided than ever over politics, race and whether or not we should wear a piece of fabric over our face (yes, you should, to protect Kevin at the very least).  There is constant violence throughout our country. While we all thought 2020 sucked, June 13 took an even worse turn for our family. There were some very dark moments for both Kevin and I together, and apart. In those darkest moments we found some of the absolute best parts of humanity that we never knew existed. The love, support, prayers, thoughts, texts, phone calls, impromptu visits, etc. have overwhelmed us in some of the best ways possible. This crappy situation has given me so much hope.

Many of you know Kennedy, she is a worrier, she is wiser than her 5 years of age, and she has little ears that listen and process more than we would ever think. For those of you who know Avery, you know this kid just cares about eating his fruit snacks and watching PJ Masks and running around outside. The love, care, attention and support that you have given our kids means more to me than anything. So many of you have stepped in and have loved our children like your own, and somedays that can take a lot. You know how to keep these children entertained, pre-occupied and to keep their minds off of everything happening around them. We know that KJ picked up on more of our conversations than we wanted her to (which is my fault because Kevin wasn't even here), and has shared some of her concerns that she has with both Kevin and I, which has been really discerning. This last week she has been able to act like the carefree 5 year old she should be, painting, drawing, talking, whining, swimming, running, and loving on her cats. 

I know that in 20 years, KJ and Avery will remember the outpouring of love for their family during this time. It is my hope that we teach them both about the value of helping others, the value of loving others and the value of giving others the support that they need. Even when they don't think that they do. 

As for Kevin, he is a walking miracle. I thank God every day that he gave us both a new outlook on our love and marriage together. While Kevin is absolutely still the same man I knew in college and fell in love with a few years later (because let's be honest, we would have never have dated in college), he has changed, and it is for the better. 

On one of my many trips back and forth to Topeka, the Rodney Atkins song "If you're going through hell" came on, and it felt so appropriate at the time

If you're going through Hell
Keep on going, don't slow down
If you're scared, don't show it
You might get out
Before the devil even knows you're there

Well I been deep down in that darkness
I been down to my last match
Felt a hundred different demons
Breathing fire down my back
And I knew that if I stumbled
I'd fall right into the trap that they were laying, yeah

But the good news
Is there's angels everywhere out on the street
Holding out a hand to pull you back upon your feet
The one's that you been dragging for so long
You're on your knees
You might as well be praying
Guess what I'm saying
If you're going through Hell
Keep on going, don't slow down
If you're scared, don't show it
You might get out
Before the devil even knows you're there

I hate that we had to go through hell and back to get where we are, and to where we will be in another year, but I am forever blessed for all of you who helped to hold us up during this time. 

Homecoming

Yesterday, just before 5, Dr. Crabtree came into Kevin's room and told him if he wanted to leave, he could.  The time between the official notice and us actually leaving felt like an eternity, but an hour or so later, we were on our way home. It was the last time (I hope) that I have to walk the long third floor hallway to Spine and Neuro to see Kevin, and the last time (I hope) that he has to sit in his room and be poked and prodded. 

Earlier in the day Kevin told me that the Hospitalist told him that he was most likely going home, so I spent most of the day getting ready for him at home - Hillary came over and walked through the house with me to make sure I didn't miss any red flags (minus the dogs and cats), and went over how to help him around the house. Once we got home, I literally turned around and he was already in the house. So much for waiting on me. 

The last almost 24 hours at home could not have gone better, the kids are so happy to see their dad, the animals all slept with him on the couch last night, thankfully I finally got the king size bed to myself (it still included a clingy 5 year old). Kevin is up and around, even getting Avery snacks and drinks when he demands them. He says he feels good, today he has a little more energy than yesterday. 

We have been asked about visitors, we don't want to have a lot of people over at once - but Kevin would love to see many of you. Please make sure that you do not have a temperature, do not have symptoms of Covid-19 and that you have not been around anyone who has tested positive or is pending a test. 

One Week

One week ago Kevin and I began navigating the unknown. One week ago, we raced across NE Kansas following blind trust in our doctors. One week ago we received devastating news. One week ago I sat in front of the Emergency Room at Stormont Vail, doubled over and, blinded by a flood of tears, waiting not so patiently for Covid-19 results so that I could be with my husband. One week ago I didn't know how I was going to tell our families, friends and children that Kevin had a brain tumor that took up a significant portion of his brain.  

Guess what - we survived. 

Throughout this past week we have realized how blessed we are, how blessed that he never had a seizure, how blessed we are that he didn't have a stroke, how blessed we are that none of this happened while he was commuting. Our blessings are truly abundant. 

Post Op Day 1, Kevin FaceTimed me at 6:30 this morning, he had already been down for his CT Scan and was not aware of what time it was. He was chatty, and getting ready to eat breakfast.  Today PT got him up, had him move around, he was able to walk, and short of his HR spiking, all other signs point to "doing well!".  They also removed the drain that was in his head, as they felt comfortable with how everything was looking.  Dr. Crabtree had warned us that the right side of his face would be incredibly swollen and his right eye may even swell shut - this morning he looked great - he said his jaw hurt and his nose felt swollen, but besides that - Kevin looks great. Short of the oompaloompa hat he has to wear.  

The CT Scan shows that his brain has completely moved back in place - they were astonished, not only because it happened so quickly - but because he also has not had a seizure. PRAISE THE LORD. Kevin says that he feels no pain, maybe a little swelling, but has not asked for pain meds at all. I told him that you don't get a trophy for not having pain meds, so he should ask for them as he would like.  

They are talking about releasing him on Monday to continue his recovery very at home - I would be lying if I didn't say that the thought of taking someone who is just a few days out of post-op brain surgery didn't terrify me. They say it takes a village to raise children, but it also takes a village to evict a brain tumor. We got this:). Thank you to everyone, I don't even know where to begin, your love and prayers are abundant. 

F.R.O.G.

Today was the day, they say Kevin most likely will not remember anything from today - and that is good.  I came up last night and stayed in Kevin's room with him so that I would be here for pre-op. Pastor Ide, who married us, baptized both children and was my pastor throughout college came and joined us. Even though he is retired, he made the exception to spend an early Friday morning with us in Topeka. He brought along a F.R.O.G. for Kevin, this is a very special F.R.O.G. because it wears it's very own mask. Some of you may remember, when we went in to deliver Avery, Pastor Ide brought me my own frog, which stands for Fully Relay On God. Pretty cool huh? 

They took him back and we said our good-byes and I love you's this morning. Patty was the RN who went back into the OR's to see what was going on and came and reported to all of the families who were waiting. We had an hour by hour update, each time was about the same "still working on removing the tumor" "the mood in the OR is relaxed and calm"

Just after 12:30 I met with Dr. Crabtree, she said that the tumor was actually bigger than what they had anticipated and saw, she just kept saying "it was HUGE". I would have to agree, I would find myself staring at the scans and the screen in our room this week leading up to today. Like everyone else, I was taken aback by the size and the lack of signs that we had. All in all it was 8cm by 7cm by 6cm. 

She said they ended up draining it, it was gooey and bloody - he had a couple of units of blood, just as a precautionary measure (another reason why it is so important to donate blood!). We have some preliminary pathology reports back, but nothing final or sharable at this time. Once we have those back, we will have some official tumor diagnosis's/names. Due to what she saw, there is a good chance that he will need to do radiation as a follow up measure. One of the blessings 

Dr. Crabtree is an amazing doctor, as so many of you have shared your personal experiences with her. 

Michelle Overstreet is an amazing women, she came early this morning - sat with me and brought her Mary Poppins bag, ate lunch with me and nourished me with pistachios and starbursts throughout the day.

I am now sitting in Kevin's ICU room, they wake him up about every 30 minutes to ask him questions. He isn't quite sure what today is, which is normal. He does think that our President is Barack Obama (and who can blame him) and they tell me is also completely normal. He knows Kennedy and Avery's name and my ICU nurse assures me that he is doing fabulous. He says that his head doesn't hurt, and is able to answer questions a little more clearly each time he is asked. 

It is truly a miracle that he had not had a seizure. I have replayed all of the 100's of scenarios of "what could have been" in my head. Not one of those scenarios ends up with the eye doctor finding the tumor. I feel like it is God's way of telling us that Kevin still has some pretty big things left to conquer in life. 

They have already started to talk about discharge on Sunday.... I told everyone that there is no need to rush things at this point - I want him to be healthy and on the very best road to recovery.  

Today's surgery was one of the biggest hurdles that we needed to overcome, next up will be recovery. 

We are beyond blessed of those people who surround us, have lifted us up and have continued to take care of us. We will forever be thankful and grateful for their unconditional love and support. 

Thursday

It was a big day, in fact - it's been a big week, but today was the day that the kids got to see Kevin. Of course they woke up early, KJ picked out a favorite dress for her to wear, complete with princess jewelry (we have changed our minds, she can be a princess now if she wants to be). Yesterday, when Avery woke up, one of his eyes was swollen shut due to an allergic reaction with a bug bite, so it was starting to look better - but when you look at him, he still has a pretty swollen eye, just a disclaimer for the pictures you will see following. 

Stormont Vail has been amazing, they brought in their professional videographer and photographer to take pictures of our family and of the process of shaving Kevin's head. The story is pretty unique to say the least. We did a few personal family interviews of each of us and they will put together a little video montage. One of our amazing RN's had the idea so that I didn't have to worry about taking the pictures and so that we could enjoy our morning. 

It's been a day full of lots of emotions and exhaustion. The last few days are certainly catching up to us, and I have to say I keep thinking I will wake up and this will all be a terrible nightmare. No such luck. 

Surgery is scheduled at 7:30AM - we will start pre-op at 6AM - big prayers tonight and tomorrow.  Thank you all for your love, your hugs, your kind words, your texts, your Facebook messages, those of you who have just gone into our home and have done housework, those of you who have done yard work... Thank you, I am overwhelmed by your love and support - we hope that we can one day repay you all for your love during this time - this too will be behind us soon. 

Avery discovered the snapchat filters

It All Makes Sense....

I think it's important that I am honest and transparent in this process, it's only fair to myself and my family - especially when we look back at this time.  Sometimes it's hard to talk about the things that aren't going right in your family, and it's so easy to hide those from others. 

For me social media is really a double edged sword - it's a great way to keep up with everyone near and far, but it's also so easy to compare your life with others. We never post the bad stuff that is happening (I mean, we are going to post about a brain tumor, that's a little different), and when marriages struggle, we all fight the battles quietly, even though many of us are all going through the same struggles. 

The last few years of our marriage, I have felt that Kevin and I had grown apart. Our interests had changed and what we enjoyed doing for fun had changed. I knew that as marriages went on, that people would evolve, but in my opinion, I felt that we had really taken divergent paths. I use the phrase "I" a lot here, because I had asked Kevin 5-6 months ago if he would be willing to do marriage counseling, and he told me that he didn't think that there was anything wrong. This was a read flag for me, and instead of insisting that we go to marriage counseling, I let things fester. I started seeing a therapist by myself, in hopes that if I could change my attitude and how I reacted, that maybe I could change my marriage alone. That didn't help and I found myself even more frustrated and alone then before. I had reached out to a friend of mine who I knew was going through something similar, and they really encouraged me to try asking for marriage counseling again.

And so I did

Right when Covid hit Kansas I had asked Kevin to consider going to marriage therapy again, I found a therapist after a lot of research, and we settled on Dr. Stephanie Wick (Andrews and Associates, Inc - if you ever need a good marriage therapist, this is the lady to see - I cannot say enough good about her). We went every week, and we talked about my frustrations (Kevin never had any frustrations, he was fine with things the way they were). We talked about how I felt that Kevin didn't help enough around the house, that I felt like we didn't have a lot in common anymore, that I felt like I was parenting alone and that I didn't feel like I was getting enough support from him. We both agreed that we loved each other, that we wanted our marriage to work, and that we were committed. We went on a weekly basis, things started to improve. Stephanie then told us that we had graduated to every two weeks - I was nervous, I feared that we would do great for a bit and then we would slide back into the old pattern. That's exactly what happened. 

After two weeks we went back to see Stephanie and we all agreed that we were concerned that this would happen, that it was expected and that we had to be more intentional about asking for what we wanted, what we needed and I needed to realize that Kevin couldn't read my mind.  We struggled over the next few weeks, trying to be more intentional about taking a night out for a date, trying to be more intentional about communicating, this was hard. Kevin and I are both Communication Studies majors, we are both talkers, but when it came time for me to talk to him about what I needed on a day to day basis, in life, in our marriage, it was freaking hard and challenging.  Marriage is hard folks. 

And then Bartholomew was discovered. 

We were visiting with the neurosurgeon on Sunday, she had asked if Kevin had changed.  Many times people who have this type of brain tumor become agitated, angry, and verbally aggressive. I assured her that this was not Kevin, in fact, he had probably become quite the opposite if anything. Then I told her about marriage therapy, and the conversations that we had with Stephanie. Dr. Crabtree says "so he's become more apathetic?" and yes, over the last 5 years that is exactly what had been happening and that apathy was been part of the problem. I had chills, it had explained so much.  She told me that he will return to normal eventually. It won't happen over night, but in 6-12 months I should have the same man who proposed to me with a scavenger hunt across NE Kansas.

Don't be afraid to share your struggles on social media, it's not easy - but you will be shocked at the number of people who are going through something similar. 

I asked Kevin if it was okay to share all of this information, he told me that it was - followed up by "this may be Bartholomew talking".....

 

Meet: The Surgeon

Dr. Crabtree-Wilson - This woman is just a few years older than Kevin and I. She was the first woman to graduate from KU Med in Neurosurgery. She finished residency in 2016. How crazy that it took so long for a woman to graduate from Neurosurgery!  She is amazing, no one has even given a side glance when they find out that she is our surgeon. She is the best neurosurgeon in Topeka. 

Yesterday while the kids were FaceTiming with Kevin she was in the room and stopped and talked to the three of us and spent a few minutes with the kids. How cool is that!

Keep Dr. Crabtree in your prayers too :)

What can we do?

I was told earlier today by several people to not feel the need to respond to all of the texts, messages, calls, etc.  Trust me, I will get to you when I get to you:). I do want to let so many of you know what is going on - everything happened so quickly and we are still learning so much at the same time. 

The other side of me enjoys writing/blogging. Something I haven't found time to do on a personal level for a long time, but something that has provided me an outlet for my own personal sanity during such fluid times. 

The #1 question, what can we do?

Great question, I don't know. 

I don't know because we have never been in a position like this, I don't know because I don't know what needs to be done, I don't know because I am so focused on my husband and children that I just don't know what I or anyone of us need right now.  I have an amazing tribe, in fact, we have just an amazing set of friends and family across this nation. When this is all behind us, and C-19 is gone, I cannot wait to hug each and every one of you.  I have been moved to tears on more than one occasion.  

One of the hardest things for me to do is to ask for help. This feels like I am admitting defeat, that I haven't been able to do something on my own, that I am not strong enough nor am I capable enough. For me it feels like a sign of weakness, and if you know me, I like to think that I am one of the strongest and toughest individuals out there. The last 48 hours have tested that. Sunday morning when I woke up, after reading through all of my texts I had received during the night, I realized that there was absolutely no way that I was going to be able to keep up with Kevin, Bartholomew (it's tough being married to two people at the same time), KJ, Aves, and Kevin's rehab. So I made some difficult phone calls to some wonderful women who had been relentless in offering their help and told them I couldn't do it alone and needed them. I will forever be indebted and grateful for the help, guidance and work they have done on the back side. 

So, what can you do?  PRAY - the only reason I have been able to be as confident and calm as I have been is because of prayer. What a POWERFUL thing it is. As soon as we started asking for prayers, we felt a huge weight had been lifted off of our shoulders (and that we were now being forced to run a marathon). Please do not stop praying - we will take all of the prayer chains that you have! Do not ask if you can pray for us us, of course you can - just do it!

If gift giving is your love language and you feel like you need to do something (this is my love language in times like this, so I get it), please work with Michelle, Jess, Jenn and/or Miranda to drop off a meal.  If cooking isn't your thing (we get it!) and you want to help in another way, let one of the ladies know, I have decided tonight that I would be okay asking for help with dishes, laundry, housework, yard work, etc. We don't NEED this, but for those of you who feel like you want to help us out, these are things that will go the extra mile and keep us focused on our end goal. If you like younger children, then maybe hang out with Kennedy and Avery - we have been trying to keep their lives as close to normal that we can, but in times like these - what is normal?  It has helped tremendously to keep them busy with other adults and little people right now. You are welcome to come and play a board game, push them on the swings or play lifeguard for them in the pool. 

What do I need?  I need to decompress at the end of the day. I would love to sit with you on the porch and have a glass of wine and talk about everything that has happened. It has been helpful to process these things every night. 

Please bear with me, I don't know what is or is not appropriate to ask for - this is new and uncharted territory for all of us right now. 

Insurance

We were hoping that today would be the day Kevin would be able to go home for a few days. We had actually told the kids that we thought he would be coming home today because that's what our neurosurgeon had planned and the orders she was writing. They called the insurance company this morning and received a hard NO. They would want Kevin to be out of the hospital for a minimum of 15 days (apparently they needed the 15 days to make the decision to go home), so instead of fighting with them, we will be staying here until Kevin's surgery on Friday.  I know that there is a lot of disappointment all around, Kevin was disappointed that he couldn't go home and see the kids and Kennedy was disappointed that she wouldn't be able to play board games with daddy.  

I am also disappointed, but there is a little bit of relief on my end as well.  Right now I feel like Kevin is a ticking time bomb/delicate flower, I would be terrified to take him and Bartholomew home with me and be responsible for both of them for a few days. While Kevin is the easiest patient on the floor right now, we are right where we are supposed to be. If something would happen before Friday morning, he will have the quickest and best care where we are. 

In the meantime, we are going to work on how we can get the kids here to see Kevin (and maybe find a way to have KJ shave Kevin's head). She misses him like crazy, she has been having a TON of play dates with friends, which has helped to keep her mind off of everything. Avery, while he knows daddy isn't home, can't stand still long enough to even FaceTime with Kevin. 

Meet Bartholomew

The last 24 hours have been overwhelming, the least we can do is have a little humor amongst all of the unknowns.

According to legend (and Wikipedia), Bartholomew was skinned alive and beheaded. Sounds like a pretty gruesome death, which is why I have named Kevin's brain tumor Bartholomew. 

Meet Bartholomew, he is 6cm x 7cm, sounds little, but when you see the brain scan, he takes up a good portion of Kevin's right frontal lobe.  He must have moved in a long time ago, because he is a real slow grower, but he is also pretty happy where he is.  We are not. No one is sure of exactly what TYPE of brain tumor Bartholomew, we will find more information about that after surgery. For now we think that that Bartholomew is a loner and that he is the only one there.  

Many of you know that Kevin is a VERY level headed individual. Not much shakes him, moves him, bothers him, etc. The last few years this has been even more stoic in nature, as the neurosurgeon says "he has become even more apathetic." I thought about it, and yes, that is the perfect way to describe how he has become over the last 5 years. When the neurosurgeon talked to him last night in the ER, before I was there, her assistant was with her and said "that went over much better than I anticipated" as they were leaving. The Neurosurgeon said that yes, that was incredibly unusual but that was the tumor talking.  Typically people who have this tumor become very agitated, irate, verbally aggressive and rude, and that is when people know that something is wrong. Not Kevin, his tumor presented in a much different fashion, because of his demeanor. The neurosurgeon said that over the next 6-12 months, I should get my old husband back, and that the old Kevin should return. 

Writing all of this out, I have realized that over the last few years, I have become married to Bartholomew and not Kevin. I am excited to have my husband back again.

June 13

June 13 - A day that will be forever etched into my memory. 

It started off with Kevin going to the eye doctor for his annual appointment. No big deal, the kids and I had started to clean the house, this was my goal for the weekend as we had let things get a little out of sorts with our busy summer schedules (sarcasm, we aren't busy, we are just lazy). We had not made a lot of progress and I had only had one cup of coffee.  It was 9:26, Kevin texted me and asked if I would take him to see a retina specialist in Kansas City. I called him and asked him what was wrong and why they wanted to see him so quickly. He told me that his optic nerves were both swollen and that he had blood behind his right eye. The retina specialist would be hanging around waiting for us to arrive. So we took the kids to my parents and drove straight to Shawnee, KS. 

The retina specialist took a look at Kevin's eyes and said that he would need to have an MRI immediately. He called the Topeka ER doctor and explained everything that needed to be done from what he saw. He would not give us a diagnosis, and not even what he "thought" because he said an MRI was absolutely necessary. 

So we drove to Topeka. Because of Covid I was left in the parking lot for the next 5-6 hours.  When Kevin arrived the ER doctor questioned his request for an MRI, he said that there was nothing wrong with Kevin and that he didn't think this was necessary.  Kevin argued back that the retina specialist was pretty determined that this needed to happen. So, begrudgingly, he had an MRI. The ER Doctor came back and told him that the good news was he didn't need a spinal tap, but the bad news was that he had a brain tumor. As soon as Kevin's covid test came back negative, they made special arrangements for me to be able to come into the ER to be with him. 

We had a chance to visit with the ER doc, the tumor is about 6CM by 7CM. Looking at the scans it takes up a good portion of his frontal lobe. Kevin spent the night in ICU, he was by far the chattiest patient they had, laughing, joking and visiting with the nursing staff.  

If you saw Kevin right now, you wouldn't know anything was wrong. He is not in pain, he has not been sick, he appears to be normal.  Everyone has come in to visit with him and is astonished that he has not had a seizure with the size of the tumor, and that there have not been more symptoms. 

This is a lot to process, we are learning more each and every day. We will continue to update you all as much as we can.  We appreciate all of the thoughts, prayers, texts, phone calls, etc.