Sunday, March 23, 2008

Brian is diagnosed - the first night. Miracle Monday

Continuing from this, this and this – brings us to just after our wedding day. I decided to break this first week of Brian’s diagnosis into two parts since there was just so much emotion associated with the first day.

After a week in tropical paradise enjoying our first trip as newlyweds, Brian and I returned to St. Louis to start our life together. I flew back to Denver the next day. Brian wrapped up some things in Peoria, packed a couple weeks worth of clothes and drove to Denver that weekend to live in my apartment for the next two weeks until our wedding gifts and Brian’s furniture arrived and we closed on our house at the end of May.

Brian arrived that weekend. The first and second week, he spent a couple days traveling – a mere glimpse into what this Denver field assignment should entail. On May 16, a Friday, Brian and I flew back to St. Louis to attend my baby sister’s college graduation in Cape Girardeau the next day. My sister graduated on Saturday, May 17, from Southeast Missouri State University in Cape Girardeau – about 2 hours south of St. Louis. My parents had 25 acres and an old farm house a few miles north of there. That is where Mindi’s graduation party was on Sunday, May 19, 1997. We spent a wonderful weekend enjoying our family, browsing through our wedding proofs, riding 4 wheelers and visiting in the hot May sun. Sunday night, Brian and I rode back to St. Louis with my Aunt Deb and Uncle Paul. We stayed at my parents’ St. Louis house even though they would not return until the next day. We had an early flight back to Denver. I was starting a new position at Lockheed Martin that week in a leadership development program and Brian was to leave from the Denver airport immediately on another trip.

Mindi and I at her graduationBrian mere hours before our first hospital encounter.

Brian and I needed to get to bed early for our early flight and in the interest of time, or to make time interesting, as Brian says, we showered together. Out of nowhere, Brian says, “Woah, what is that?”
Me “What is what?”
B: “My hand feels totally weird. It is tingling, like it is falling asleep, now it is up my arm. Woah, my foot. My tonnn….. Maaa…. Tuuuu….… Gaaa……... Ou……” He gets out of the shower. He grabs a towel. He sits on the toilet.

I get out of the shower. I grab a towel and ask, “Are you alright?” He shakes his head no. “What’s the matter?” I ask.

He shrugs his shoulders and tries to talk more… “Caaaa…. ya…. geee gaaaass?” He makes a gesture as though he is putting on his glasses.

Me: “You want me to get your glasses?”

He nods yes.

Me: “Brian, what is going on? Are you okay? Do you need to go to the hospital?”

He tries to speak again: “Yaaaaa,” he nods. “I…caa….taaa…..”

We don’t have a car. My parents are not home. I grab the phone and call my aunt Deb and Uncle Paul. They live a few blocks away. Paul was going to take us to the airport the next day on his way to work. I explain what I can of the situation and ask for a ride to the hospital. Paul says he is on his way. He is at the house in minutes.

In the meantime, Brian’s episode subsides. He is now completely fine as though nothing happened. He can talk. His hand feels fine. His body feels normal. He considers what just happened. He had experienced a series of strange sensations all on the right side of his body. He lost his ability to speak for a few minutes. Then he was fine. I am trembling. Paul comes in the house. I am still half-way wrapped in a towel. Brian explains to Paul what just happened and we try to decide if we actually need to go to the hospital since Brian is currently fine. Paul tells me before he can talk about it I have got to put some clothes on. We laugh. I put some clothes on and we head to the hospital just to be safe.

Since everything seems to be fine, Paul drops us off at the ER and we decide we will call him when we are finished. Who knows how long this may take? We have never had a fast ER experience. While I am filling out admission papers, the triage team decides to put Brian on an EEG machine since all his symptoms were right side specific. I don’t know any of this information on these forms. We have been married for 4 weeks. I take the clipboards back and find my man laying on a gurney hooked up to EEG smiling lovingly at me. We laugh about how we will get mere minutes of sleep before we have to catch our flight. We speak to the extremely young ER doctor resident. We joke with him. He asks what our activities were that day – a few beers, riding 4 wheelers, hanging in the hot sun. He leaves. My Aunt JoAnn – an O.R. surgical tech – arrives. I think nothing of it except how nice it was for her to come so late. It is around 10:00 by now. I tell her we will just call her when we are done. She says she will just stick around. To this day, I have never asked her why she came to the hospital that night. I am sure when Aunt Deb called her to tell her what was going on, she must have known it could be something VERY serious. Is that what happened, Aunt JoAnn? The ER doctor comes back in and says they are going to do a CT scan, JUST IN CASE to rule out everything. Okay. I watch my husband get wheeled away on a gurney for the first of what will soon be countless times.

When Brian is wheeled back, it is getting quite late by now. We laugh that we probably should just stay up because it will be harder to wake for our flight if we sleep now. It is approaching midnight, I think. The ER doctor returns. Here is what I remember from there: “I don’t really know how to tell you this. What you probably experienced today……. seizure……… Your CT scan was abnormal……… lesion………….left side of your brain…..I’m very sorry.” This meant almost nothing to me. Lesion? What the heck is a lesion? What does this mean???? Aunt JoAnn starts to cry and says, “Darnit. I was hoping this wasn’t the case. I was afraid of this.” She rubs my back. I stare blankly at the ER doctor, then at Brian who looked as lost and confused as I was. Brian said, “What does that mean?”

Too-young-to-bear-bad-news-to-someone-his-own-age ER doctor replies, “We are not really sure… to specialist….. any number of things….more tests….admit you right away….neurological ward…..I’m very sorry.”

So there it was - the elephant in the room we didn’t even know we were ignoring for the last two hours.

Brian looks at me and I at him. JoAnn leaves us alone for a minute. Brian says I need to call his parents and have them come to St. Louis. They live in Peoria – about a 3 hour drive from St. Louis with Brian’s youngest brother, Michael, who is 16 at the time. As he is telling me this, he has another episode. It scares us and I notify the staff. We don’t understand these episodes yet – the tingling sensations, the sudden inability to speak, the randomness, the sudden onset. (We would learn throughout the course of that night he was having focal sensory seizures. They were triggered from the abnormality in the scan – on the left side of his brain – controlling the right side of his body.) I am crying, shaking, trembling from my quivering lip to my icy cold sandaled toes. Not understanding the seizures yet and what they mean, Brian tells me to make sure his family knows he loves them – his parents, his brothers and Brennen, his nephew, too. When the episode is over, he tells me to “make sure you live your life – move on – be strong. You are beautiful and you need to know I expect you to marry again and I love you all the same. It is okay.” I kiss him. I lay on the bed with him for a minute and he tells me I have to go call his parents.

I leave the room. I still don’t understand what this means. Lesion? More tests? I have to ask JoAnn. I have to find JoAnn. She is in the lobby with more of my aunts now. Aunt Vicki, Aunt JoAnn, Aunt Deb. I think anyway. I don’t remember. I just know that it must be even more serious than I understand at this point in time. JoAnn helps me find a nurse to use their phone to call long distance. This was 1997 before everyone carried a cell phone and when pay phones were plentiful. I don’t remember what I said to Jan and Ed, Brian’s parents. I know I am trembling. I know I am nervous and I know I call them around 1:00 in the morning to tell them to come to St. Louis right now because Brian was having all kinds of problems on the right side of his body and they were admitting him to the neurological ward right away. I hand the phone to either the nurse or Aunt JoAnn and they tell her more and give her directions. As a mother today, I can’t imagine what she went through. I can’t imagine what happened next at their house. I have never talked to her about it. I know that less than 6 hours later (3 hour drive), Ed, Jan, Michael, Sean and Cheryl (Brian’s older brother and wife) showed up in the neurological unit in Brian’s room.

After the phone call, on the way back to Brian’s room, I can’t breathe or think. I must have heard the word cancer somewhere in the last hour because I am now consumed with thoughts of Brian’s death. I am consumed with fear, uncertainty, sorrow and fatigue. I collapse in the hall to my knees – and not metaphorically. I should take it as a chance to pray to my God humbled on my knees, but I don’t. I pick myself back up, brush away my tears, and walk into Brian’s holding room. We hold each other in that little single hospital bed, kiss and cry ourselves back to reality.

Brian’s family arrives at the neurologist unit in Brian’s room by early morning – around 6:30 am. Brian is still having episodes every 45 minutes or less. Each one more frightening to us than the last…what do these mean? Will he lose consciousness with the next? He asks me to leave the room and has words expressing his love to each of them privately.

By mid morning, after meeting with the neurologist, we understand Brian’s episodes better and she easily controls them with the correct medication. Brian needs a large first dose to get therapeutic levels in his blood. Once that happens, he doesn’t have another episode for weeks. At this point time, though, we have to determine exactly what the abnormal spot on the CT scan is. We have only been at the hospital for around 12 hours at this time.

This was one of the worst evenings/nights of my life. This was also the beginning of a new journey for Brian and me. This was the first day we were struck down to the point of such despair and confusion that we found ourselves desperately searching for logic, hope, reason, ANYTHING. This was the first day Brian and I would begin our journey to the relationship we have with Christ today. That is the biggest miracle of all that particular night. Another miracle was this: my Aunt JoAnn was nudged by God to be at that hospital with us that night. Aunt JoAnn stayed with us all that first night. Aunt Vicki, Aunt Deb and Aunt Jane – were you there all night? I just don’t remember. The only phone call I had to make was to Brian’s mom. The remainder of our very large families were notified all thanks to JoAnn’s first phone call. I didn’t even have to call my mom, who at the time, did not handle news like that with as much grace as she does today. We would have been a mess together. Also, JoAnn, having some surgical connections, immediately asked if we wanted the name of some neuro-surgeons as that was the recommended next specialist. Where would we have begun with this if not for her? She called a neuro-surgeon for us and he was coming to meet us in the morning. Aunt JoAnn was the person we needed at that exact moment in time. She listened to and obeyed God’s promptings for her to be there. We are so thankful she did.

Next week… The rest of diagnosis week: Discovering many more truths.



  1. I remember this story so well, it is no less moving to hear it again. God does not ask our permission to work in our lives, or what to allow and not to allow. I think you have a beautiful love story, both with Brian and with our Risen King.

  2. Angie, I am sitting at my desk at work trying to begin the day and I have tears streaming down my face. My thoughts and prayers are with you every day. Thank you for sharing this. I know it must sting to revisit those first moments but also how amazing is it that you have come this far? I will Keep Believing because of you.

  3. I am crying and my kids are wondering why! What a story, I cannot imagine what you must have been feeling, imagining, worring about. I am so glad your Aunt followed that promting to be there for you. Ithink to often we ignore the promptings we recieve. Bless her!!

    Thnaks for sharing. Iespecially love the part about being on teh shower together -- ahhh newlyweds :)

  4. Oh man Angie.

    I am crying out loud like a baby. Your words read like a Lifetime movie and I just lost it.

    You guys are such a strong and beauitful family. Makes me realize what is truly important in life. Love.


  5. Angie, thank you so much for sharing such intimate details with us. You have gone back to that day, and that's so hard to do. Not everybody has one of those days. I truly believe that you and Brian have suffered on a level that not everyone has...and for that you have experienced God on a unique level. You get to know the Christ who suffered. You understand better that aspect of Him.
    I hope you have a peaceful day...reliving my "day" usually wears me out. Love on yourself some today. I wish I was there to hug ya. We'd have some coffee then dance to Vampire Weekend!

  6. Thanks for sharing this, it really touches my heart. I am praying for you dear one.

  7. Thank you for sharing this story. I am sitting here crying and can't even imagine any of this horror. Bless you.

  8. I remember receiving the message that something was wrong with Brian back in 1997. I had just learned that I was shifting roles within Hallmark. I was getting off third shift and heading to their headquarters. I also remember thinking how lucky Brian was to have Angie because she was always so strong. I knew she would be there for him to help him whenever he needed uplifted. There are many people placed into a similar circumstance who would have taken the flight over the fight approach. The combined strength is the direct contribution to how far you two have made it as a young newlywed couple. You both continue to inspire me! Love HUD

  9. Wow...not sure I have words to follow that.

    It all happened so fast...

  10. Hi Angie,

    I'm not sure how I linked over here, but oh my...

    Your story brought back many memories for me.

    My son was dx with a brain tumor over 6 years ago, a journey I would of NEVER dreamed of taking.

    Our story was different, but the same emotions, fears, and so many questions.

    It's funny, we were also first told there was a "lesion" in my son's brain. I almost felt "relieved", after all it was just a lesion I thought, WHAT WAS A LESION???

    My son is doing well, and beating the odds. We serve an AMAZING God and I'm so grateful.

    So nice to meet you, I'll be back for the rest of this amazing story.


  11. Angie,

    The strength that you and Brian have just amazes me. I wish it didn't take stories like these to make me refocus my life and priorities, but I thank you for sharing your story.

    Since coming across your blog,I keep wanting to write Keep Believing on everything. These are words I have just come to live by.

    I will Keep Believing for you also. You are in my prayers - always.

  12. Your eloquent words about this trying time are inspiring to many people. Thank you for sharing and for believing.

  13. Your post is a great reminder that God can use us to do his work and to be part of His miracles. I like what you said about your Aunt JoAnn listening to and obeying God’s promptings. Since she did, God was able to use her.

  14. I can't imagine. I feel like I was there.

  15. Oh, my Sweet Sister, this brings back so many memories. I remember those first hours, days, weeks after learning that Brent had cancer. You are right to seek GOD and put your COMPLETE TRUST IN HIM! JESUS died for both our spiritual and physical healing. The BIBLE says, "By HIS stripes we ARE HEALED." Keep taking your requests before the GREAT PHYSICIAN and TRUST HIM with your EVERYTHING.

    I'm praying with you!


  16. Wow, Angie. I felt like I was there in the hospital with you. My husband walked in as I was reading & wanted to know what had made me so sad.

    Thanks for sharing your poignant story with us. Your family remains in my prayers.
    Big Hugs!

  17. Oh, Angie! What a heartbreaking story, and you are an amazing, strong woman! I can't even imagine what that must have been like. And what you still go through today. You truly are just amazing.

  18. Oh my god! I can't believe how fast that all happened! And when he asked you to leave the room so he could tell each one of them personally how much he loves them... So heartbreaking.

  19. Angie, I hope that your beautiful blog helps in some way - a cathartic release to put this story down. Thank you for sharing this exquisitely personal journey. You are an amazing woman. You are all in my prayers.

  20. Angie, thank you so much for sharing this with us. Your story made my eyes fill with tears. I can't imagine how difficult this must be, especially while newlyweds. You and your family are so beautiful. You are all in my thoughts and prayers.

  21. There are certain events in my life that I will always remember exactly what I was doing at that moment. That first day when you first learned of Brian's diagnosis is one of those events. But I never knew all of the details as you wrote them here. You were so, so young. How terrifying.

  22. Thanks so sharing and I hope that it isn't too hard for you to do it. You and your husband are truly amazing and we are praying for you!

  23. Angie, may I say your words brought me to tears. Not in wallowing sorrow, but in inspiration. You and Brian are so lucky to have one another.

    And wow, what a talented writer you are.

  24. Angie, I cried when I read this post. You write so beautifully. You and Brian are so lucky to have one another. -Karla

  25. I tried to comment yesterday, but for some reason I kept getting this strange error message...

    What an amazing story and journey. You two are lucky to have each other and to have such an amazing family!

  26. thank you so much for sharing your journey...praying for you and your beautiful family!!!

  27. What an amazing testament to true, unconditional love and to God's miraculous way of being there for us when we don't even know we are going to need Him.

    Like others, your writing is so vivid that I felt like I was right there. And when you fell to your knees in the hall I wanted nothing more than to put my arms around you and help you hold on. And then you stood up, gathered your courage and walked back to the side of your literal other half. What an amazing couple you are that you have been able to stand strong and together through it all. There are many who could learn so much from your example.