Author: Stephanie

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The Diagnosis

Tom ended up in the hospital this week. It was a mix of emotions of being scared at how much he has declined recently but also a sense of relief that he would be watched by medical professionals more closely.

It has been a long road to get us to here. This is a really long post, so buckle up. I am not a medical professional, so this is my interpretation of everything.

Tom’s symptoms started in 2021.

At the time he was having really bad heartburn and gut issues. It was also around this time that he had gum pain due to severe inflammation in his mouth. He was referred to a rheumatologist and started a path for treatment for seronegative rheumatoid arthritis. The way it was explained was that his system was producing anti-bodies that attack his body causing the soreness and inflammation. It felt like we had a diagnosis and a treatment.

However, over the next two years it was an ordeal to find the right medication that would treat his symptoms and not make him even more miserable. He went on different immuno-suppressants, but what this ended up doing is giving other things free reign to rule over his insides.

His heartburn grew to vomitting regularly. He was physically sore and arthritic all the time. He started trying to narrow down foods to see if there were trigger foods to the stomach issues. He cut out many groups of foods including his favorite lasagna. Sometimes it seemed to help, other times it seemed like he was not able to eat anything that didn’t become a “trigger” food.

The symptoms just kept growing in intensity and in oddity.

In November 2022, Tom suffered a stroke in his lower extremity. Fortunately, the stroke showed that he had testicular cancer that we may have not found until it was too late. He had a fairly immediate orchiectomy. Unfortunately, because he had to be on antibiotics due to the surgery, it messed with his immuno-suppressant medication for the seronegative rheumatoid arthritis. These two do not mix well together. So his immune system had to be rebuilt in a way after this surgery.

Tom was still on the mend, when our house got hit with a bad stomach bug in February of 2023. It turns out we all had norovirus, but it hit Tom with a vengeance. I will not forget being in the bathroom getting ready and watching him puke blood everywhere like he was a fire hydrant before I dragged him to the hospital. Due to his compromised state already, norovirus almost killed him with the amount of blood he was losing. It turns out that he had a stomach ulcer that ruptured when he got the stomach bug that they rest of us cycled out of in 12 hours.

Around the fall of 2023, Tom’s immuno-suppressant medication stopped being affective. There is a shelf-life to some medications, and it seems that his symptoms with his chronic nerve pain didn’t want to play nice.

He started narrowing down even more foods in his diet to get as clean as possible. It seemed like every day he was weeding out foods that he thought was a trigger food. He made bread from scratch to not have preservatives and made beef tallow to use as cooking oil to get away from seed oils.

Some days were good, but the very next day he would not be able to walk.

The beginning of 2024, unbeknownst to us at the time, was the start of a steep decline.

We all passed around a cold early in the year, and again while the rest of us got over it, Tom’s turned in to walking pneumonia. And it lasted for months.

We had approximately 15 trips to the ER to receive urgent care, but he would just be ping-ponged back and forth between the ER and his primary care with neither taking ownership of handling his medical needs. Most of the time he would not even get any fluids and would be turned away without any medical intervention. There was one time I went with him that they tested him for COVID and Flu which came back negative, and we begged for fluids because he had been puking. And they denied the request, until he started puking in the ER. It was just one doctor after another not seeing the severity of his symptoms. Or they would see them but tell him that he should get primary care (he has VA healthcare), or and I quote, ” I don’t know what you want me to do about it.”

After months of not getting better, we finally demanded and begged for scans. Tom was absolutely miserable with the pneumonia symptoms, but he was also experiencing other symptoms and they seemed to increase with each passing month.

These scans came back in May and we received the dreaded call that there were multiple growths in his lungs and esophagus. There were too many for them to count on the scans, but it did not seem serious enough to rush him into surgery. We waited for a few weeks for the next steps.

In June, he had two different scoping surgeries to pin point what was going on with the growths. Were they cancerous or fungal? He had one in his lungs and one in his esophagus. They both came back negative for cancer or fungal, so it is still a mystery why they are there in the lungs. The esophagus turned out to be 75% covered in cavitated ulcers. Which doesn’t help when you are puking daily.

As all of this is happening in May and June, other symptoms were really ramping up:

  • blindness
  • paralyzed from the waist down
  • nerve pain
  • sores on his skin (they were more like open gashes that would just pop up out of nowhere)
  • spider rashes
  • severe weight loss (he has lost 65 lbs in the last 6 months…see the picture above)

It seemed that any time we would go to the hospital, people would treat him like he was a hypochondriac. I mean it does seem unbelievable to be blind one day and a few days later to be normal. It was like we were on a twisted medical rollercoaster that no one would help us get off of.

We have been desperate this summer. Tom and I both have cried in the ER to different nurses and doctors begging for someone to take a holistic look at his situation. We hoped every time we went to the ER that they would admit him. We were denied a referral to Mayo, and felt like we were out of options. I was just watching Tom waste away. He is no longer able to drive. We have canes and a wheelchair, and it was like we were living in hospice care in our house. I started waking up at all hours of the night or coming to check on him in between meetings at work just to make sure he was still breathing.

Eventually we were forced to begin end of life planning. We sold assets, planned funeral music, and had hard conversation about what he wanted if he wasn’t able to make his own medical decisions anymore.

The one ray of sunshine is that a doctor on loan from University of Missouri was brought in to review the scope of Tom’s lungs. During the consultation he stopped and began asking questions about unrelated medical questions. The questions were very strange, but very on point and it almost seemed like he was reading Tom’s mind. Like the were asking the size of his boogers kind of weird…

Little did we know he was a real life Dr. House. He perked up mid sentence and said “You don’t have Seronegative RA and you aren’t on the correct meds. You have Wegener’s Disease” He scheduled the test to confirm for Tuesday. Looking back each of the symptoms I described above could be explained by the Wegener’s Disease, down to his massive boogers. It seemed like there was a light at the end of this tunnel.

But then Monday Tom fainted at the dentist office.

Since the VA hospital here is ALL medical care, they were able to get him to the ER in the same building. This time for whatever reason, the doctor there decided this was the time to admit him.

While a hospital stay is never ideal, it did seem like a ray of hope for us. It felt that someone was finally taking it seriously, and they couldn’t ignore what was happening if they had them in their constant care.

He has had labs daily. He had two more biopsy surgeries: one on his hand where one of the sores was festering and the other on his kidney.

He was eating three square meals a day but he still lost 3 lbs this week, under their care.

But we inched closer to a diagnosis. Two infectious disease doctors flagged the idea of Wegener’s disease or GPA, so all the tests this week were to confirm that diagnosis.

And we finally got it, and treatments have started.

GPA is very hard to diagnose because it is extremely rare, and the symptoms often lead you on a twisty path or they are misdiagnosed which delays the real diagnosis. Most of our doctors had never heard of GPA until Tom walked in. It is one of the only autoimmune diseases that attacks organs with inflammation. So many of the doctors we talked with this week said his symptoms were wild. The symptoms and side affects are out of this world that they are almost unbelievable. The symptoms are so crazy that the doctors don’t know what to do so they only chase one symptom. Even this week, several doctors wanted to him to have a stomach biospy to rule out lymphoma because they were honing in on just the digestive inflammation. Three in 100,000 people get diagnosed with GPA, but many get diagnosed to late because of this. We have been hearing that only about 3 in a million survive because they don’t receive the GPA treatment in time. Once the symptoms start, if left untreated it is fatal within 2-3 years. We are at almost the three year mark. My stomach just drops knowing I was watching Tom die right in front of me.

But we are finally here.

A diagnosis and a treatment plan.

Praise be to God.

The treatment plan is fairly simple once diagnosed. He is on day two getting the right medicine, and he is able to walk unassisted for the first time in months. He is still restricted due to the loss of muscle mass. however the pain that was eating him alive seems to be miraculously subsiding.

Praise be to God.

Thank you to all who have prayed and reached out for support. This journey is no where close to being over. He has a long road to recovery still, but we know we saw a miracle this week.

Year 13
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Year 13

Today is our anniversary.

When you get married, you are full of excitement. There is nothing but celebration around you. You are looking towards your future and you tend to focus on the happiness that is before you. You think about the mundane routines that you will experience together. You dream of the family you are going to make. You think about the LIFE you will have together.

What I didn’t realize 13 years ago when we high-fived our I dos, is how much we were choosing a partner to navigate death with. I mean I imagined growing old with Tom, as I sing the Adam Sandler song from The Wedding Singer. So it seems obvious that when you say “till death do us part” that was part of the deal.

However it feels different when you start navigating that stage of life.

Tom has an illness that will be with him the rest of his life, and can cause life-threatening situations. We have been searching for the past couple years for the right diagnosis as we hone in on different symptoms. He has seen a sharp decline over the past 6 months, but especially over the last few. We are looking at a long road to maintain positive health, but there are still a lot of unanswered questions. Our life lately has been trips to the hospital, surgeries, biopsies, scans, and a carousel of doctors.

I didn’t imagine to be talking about end of life plans this early in our marriage, but here we are.

It is in these moments that I find that I am blessed to be in this marriage. I could easily say “why us?” or think about life if it went a different direction for us. But then I wouldn’t have this marriage as it is, and all that it has given us despite our current valley.

This marriage has taught me about unwavering love.

This marriage has taught me the value of partnership.

This marriage has humbled me.

This marriage made me a mom.

This marriage has given me everything.

Our wedding verse is a constant comfort for me in this time.

It is often in the valleys where we are stripped to our core and made to learn about ourselves and life.

I am constantly learning about compassion as I watch him be in constant pain. Tom has always been the strongest person I know, and it can be easy for me to just expect the same since life is moving around us like everything is normal. I have needed to slow down and be there for him in new ways and try to understand what new support looks like.

Kindness in a marriage should be a given, but it can be hard when the stress is piling up. It can be hard on a relationship to go through any hard time, but even more so when health is affected. Tom feels helpless because this illness has him knocked down, and I feel helpless to fix any of his ailments so I am trying to keep everything else afloat. But that can make it easy for us to be stressed around each other, and it has been a good reminder for us to be kind in the simplest of terms.

Everything about this year has brought us to our knees and humbled us in ways that we didn’t even think was possible. It has made us be vulnerable in new ways as we continue to grow together. As we have humbled ourselves, we have been able to share more depth about each other and our hopes and fears.

When you are dealing with the hardship of life, being gentle is a weird concept. You’re kind of like an eggshell yourself never quite knowing what will break you. You don’t want people to pity you, but at the same time it can be a large weight to bear. You try to make yourself stronger than maybe you really are to just make it day to day. I am reminded of the extraordinary gift of gentleness that we can offer each other in our marriage. Our world is often filled with chaos and noise, the soft touch of gentleness has the power to soothe our souls, nurture our bond, and create a sanctuary of love and understanding between us.

Patience. Deep down, I am not a patient person. I get anxious waiting on others and want to know what is happening so I can prepare. Being a mom definitely has tested me in that, but so has being married to Tom in everyway. He walks boldly in life, and that can be a wild ride for this anxious heart. He joined the Army, became a police officer, and now has this unknown illness that makes me stop in my tracks daily. I have to be ok with waiting a lot in this life. I pray that God grants me the strength to persevere in times of trial, to remain steadfast in times of uncertainty, and to hold onto hope in times of despair. In my moments of impatience and frustration, I have to ask for help to cultivate a spirit of calmness, understanding, and perseverance, even in the face of these challenges and uncertainties.

There is nothing like facing death that makes you realize holding grudges or bad feelings does no one any good. One of the most remarkable aspects of forgiveness is its ability to bring about profound healing and transformation. By choosing to forgive, we free ourselves from the chains of bitterness and resentment, allowing us to experience inner peace. We quite frankly don’t have time to be mad at each other, so it has been really healing to just let things go and return to love.

Because above all else is love. Love is what got us started. Love built this family. Love is our foundation. Love ties us together.

While this year has been full of strife, it has also brought us immeasurable peace as we both have grown in our faith in God. Everything about this has been scary and unknown, but we have put our trust in God to pull us through this. We have been telling each other that God has something in store for us with everything that is happening. We may not know what that is, but we have found peace that this is the life He chose for us and there is purpose in that. We have had to learn to trust in His divine timing.

And for all of this I am thankful. I am thankful that we started dating 17 years ago during our summer jobs at Worlds of Fun. I am thankful that Tom asked to be tied together 14 years ago on the shores of Savannah, GA. And I am thankful that we chose to navigate life together 13 years ago when we got married.

I am thankful for everything because even in the hard, there has been so so much good. And I wouldn’t change anything about that, so I will take all of this hard now knowing we have more laughs and good to experience.

Happy anniversary, love.

Daphne Year Seven
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Daphne Year Seven

This sweet girl of ours is turning seven today. As I look back on the last year, she has grown so much. I am so proud of who she is becoming.

In honor of year lucky seven, here are seven things I love about Daphne Christine.

She has an incredible ability to tune into other people’s needs. She is so observant to how people are feeling and their interests. She picks up so easily how to fill other people’s cup. Her kindness shines through how she cares for other people and making their day is her specialty. She really pays attention to make sure people feel seen and taken care of.

    She loves to learn. She is always asking questions and trying to piece together explanations. Her reading level has skyrocketed this year. We cannot keep enough books around her that she hasn’t read. And she loves sharing what she has learned. She is always sharing facts and stories of things she has picked up. And it is like a glow coming off her when she is soaking in or sharing information.

    Her imagination is magical. She can concoct these fantastical worlds around her in such great detail. She easily slips into play, and it is so fun to see her weave stories together. The creativity that pours out of her never ceases to amaze me.

    Her deep belly laughs are like medicine to your soul. She giggles with her whole body, and it warms my whole being to be in her joyful presence.

    Her attention to detail is unmatched. She has always been particular to even the smallest point. When she was little she use to make these maps that were so intricate. Now she does it as she creates different stations and organization in her room. She plans things out to the most miniscule detail with great thought and attention. And if you get her started talking about fairies or Pokemon, get ready for an insane amount of detail that you never knew existed.

    Her fierce love for her brothers is one of my favorite things about her. She corrals them with such tenacity. She is always wanting to keep up with George, and loves to dive into his interests to gain connection. And she is ever Wally’s protector and is the Wally whisperer. She is the perfect sister to them both. She can weave between their ages effortlessly and gives each of them what they need. She loves being a sister and will always be the bond that keeps this sibling trio in balance.

    Her determination and strong-will is unmatched. While she can be cautious to start new things, once she has her mind set she is unstoppable. She can hold fast like no one I have ever seen.

      She is my little mini-me, and I can’t wait to see how she moves through life. I pray every day that she leans into her kindness, strength, and positivity. My hope is that her journey is filled with joy, learning, and countless blessings. May she grow into a compassionate, resilient, and confident individual, shining bright with her unique gifts. Happy birthday my dearest daughter, and may this special day be filled with love, surprises, and obviously McDonald’s. Here’s to another year of growth, adventure, and beautiful memories ahead!

      Mother’s Day
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      Mother’s Day

      As a kid, there were two things that I thought were going to happen for me when I grew up: become a mom and have more control over my life.

      Well one of those things happened.

      I love being a mom, but the biggest lesson I have learned after almost a decade of motherhood, is that I have to give over the control for happiness and to be truly present.

      Before becoming a mom, I knew that our schedules would change. I knew that there were parts of their growing up that would be out of our hands. You know the big stuff. I can’t control when they get sick or what their interests may be.

      But I never thought to think about the mundane day to day things that would make me feel out of control and have to remember that I prayed for this life.

      Over the years there are definitely things that pain me to watch and parts of me cringe not being able put order into little moments. Losing control is part of motherhood, and it is perfectly ok to feel crazy about it sometimes. I have had to normalize this feeling over the years because there are times that I felt like I was losing my my mind because things were not happening in a certain way. Motherhood is anything but control, and we are often just living on a hope and a prayer.

      My house is in a different state of chaos at all times.

      There are cardboard structures and blanket forts as permanent decorations. There are toys everywhere, and it looks like I am running a daycare in my living room.

      But this is also where their imagination soars, and I know there is so much that comes from feeling safe to do this kind of play in all spaces of our house. I don’t want to stifle this childhood because I need things to be presentable. I want them to remember all the exploring and creating they were able to do in our house. I don’t want them to be “bedroom” kids and think that is the only space in the house that is theirs. While there is some truth to that, I love that you see marks of their childhood throughout the house.

      Our dining room table is more of a dump area than a community space.

      But this is also where everyone can shed the weight of work and school before they step into the rest of the house. I want them to feel the comfort of our home and for it to be lived in because well, we live here. And honestly having this right off our entry way makes our lives easier to just dump things and know the things we need to leave the house are piled here.

      I thought that because Tom and I were good eaters, that we would be able to role model eating a wide array of foods. So when all three of them have been picky over the years, I feel at a loss on how to make sure they are getting what they need. I always thought that you eat what you get would be a good enough stance to just work.

      But then I realize that if I have to buy the 40 piece nugget option at McDonald’s to make some nights easier because one child will only eat this type of chicken, then so be it. I will take back some control in that way and just accept the boujeeness of it all. While I can control what is on their plate, I cannot control what they choose to actually eat off that plate. I want them to learn how to speak about food in a healthy way and me losing a little control by not requiring clean plates actually lets them create healthy relationships with food.

      Unfortunately the things that makes me lose my marbles the most is how my children approach their clothing. It is like nails on a chalkboard watching them put outfits together with mismatched patterns and colors. And I struggle that no one seems to catch on how to organize a closet around here.

      However, I love to see their faces when they are so proud of the outfit they put together. I wish I had the confidence that they have when I was going through school. Also I have to realize that everyone has their own organization style and at least they are getting their clothes to their closet. Ownership here doesn’t have to be about my ownership, but how they learn to move through the world.

      I guess in a sense then, I really do have control. Control to understand when to put boundaries around my own peace and give in to letting them have theirs. I do get to control the type of motherhood I do want to embrace. Sometimes I do organize their closets for my own satisfaction, but most days I will myself to let it go. And while there are times I wish our house was cleaner or that we didn’t have to cater to so many different eating preferences, I also wouldn’t trade this life for anything. I get to lean into the chaos of it all. At the end of the day, I know that I don’t have to control everything in motherhood. And honestly, I think that is some of the beauty of it. The lesson has been knowing when to give some of the control to them in order for them grow. And it has been magical to be part of it all with them.

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      In Pursuit

      Anyone who is close to us knows that this last year has been lots of ugly words. Tom’s health has been a rollercoaster. He stood up to a corrupt city and lost his dream job because of it. Now we are in a lawsuit with the city we live in which comes with so many twists and turns and loneliness. My job has been constantly changing over the last year, and we have had to withstand many hard decisions as higher ed is in a turbulent time. Needless to say we are tired and it could be easy to lose faith in it all.

      But as the year turned over to 2024, I was determined to take back my faith. I wanted to really lean in, and I will admit for mostly selfish reasons. I was lost and sad and felt like there was no good around us. It was a dark place for us. So I started trying to listen more to God and trying not to get ahead of his plans and try to reason with all the heartache that seemed to just fester and multiply around us. I thought what was the worst that was going to happen if I just let go of the controls and really trusted God, but that meant I needed to pursue him more.

      I believe that your testimony is ongoing. At least it has been for me. I have had moments in my life where I have gone up and around my relationship with God. I have had periods in my life were I didn’t feel like I needed to depend on him as much, sometimes because things were going great, and other times because my timing didn’t seem to align with His and I thought I was just seeing disappointment so what was the point if I didn’t seem taken care of.

      But this year after experiencing our trials, again maybe for selfish reasons, I thought what have I got to lose getting to know my God more fully and deeply. So this year, I am determined to pursue that relationship more.

      I had a desire to become more grounded in my faith and be able to truly let go of what I thought my path was. Healthy souls will be unhealthy if left unattended, and here I was with a unhealthy soul already. I knew I needed to change my routine and immerse myself in the Word differently. We go to church and I listened to a Christian podcast as I got ready every, but what I was doing outside of that in action was so inconsistent. People were just talking at me about faith. I wasn’t really bringing other things to the table to learn and get involved with it. I didn’t pray daily, my bible had a layer of dust on it, and my bible app would send me into guilt every day with it’s notifications that I would quickly swipe to ignore as I never seemed to have “time” to open it. I had let my relationship with God be more of an acquaintance. I believed in God, but I needed to spend time getting to KNOW God.

      So to start off the year, I did the Forty Forty challenge. I needed a way to stay accountable to carving out time each day. I love a good accountability challenge, so this seemed right up my alley to help with my habits changing. This challenge is doing a mile a day for 40 days, but that mile is where you intentionally connect with God by listening to bible verses, devotionals, prayer, or worship music. I did a little of it all. I chose a 40 day devotional in my app. Then I would listen to the Let’s Read the Gospels podcast (highly recommend). And then to round out my mile, I would end on one or two praise worship songs.

      The way my mind shifted over those 40 days still gives my goosebumps. I have kept this routine pretty steady after that 40 days ended. My life is still hard, but I found ending my day connecting with God and praising him changed my reactions. I was brought to my knees on more than one occasions because of the perfect timing of a verse that connected with an action earlier in the day. It helped me release tension as I danced in praise. I could feel fear of the unknown just wash away.

      Now did it stay away, oh heavens no. My anxiety is still very much present, and there are days/weeks were it gripped me hard. I am human and still lost sight of things often when I felt like I was losing control and thought my path was not going the way I had planned. I cried why me/us or why not me in other situations an embarrassing amount of times. However, what I noticed is that if I would just change the input of the Word in those moments, I would find a different peace. Whereas before I may have looked for answers, I was now finding peace even in the absence of answers. My faith is growing, and what I put myself in contact with, I will catch.

      I still want to be in control and know what is up ahead. I don’t think that will ever change due to my personality. But what I have learned over the past few months is that faith can give me some control too. I know that I don’t have to know what is coming, but I do know that God has me.

      2024 has been humbling. I know I am still broken and still struggle. However, I have been reminded over these months that brokenness is a requirement for salvation. If you look throughout the Bible, there are so many examples of Jesus reaching out to broken people or God using broken people for big things. God desires to take what is broken and redeem us. He is always pointing us to the cross and the redemption he has given us. Our pastor shared a lot of good nuggets over the past few months that have really encouraged me to write again here. He talked about if you put pottery back together after being broken and hold it up to a light after being restored, light will shine through. Let that sink in. We can be fully broken and our lives torn to pieces, but His redeeming Grace can still let light shine through us and our life on Earth.

      So this year has been terrible to us, and there are many days I can’t think of nice things to say. But if you can’t think of anything nice to say, talk about your hope in Christ. So that is what I showed up today doing. I hope that the light is able to shine through my brokenness. I am trying really hard to know and accept my imperfections for His Perfect Plan. If you allow God to walk into our darkest valleys, He will make it holy in ways we can’t make it on our own. And I am learning to trust more in that than to believe in what I think my life should be.

      He’s got this.