Tag Archives: GBM

Featured Blog Post – Dustin

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Rebecca was amazing to sit down and write out a blog post to share how Glioblastoma has affected her life. I almost typed “her story” but there is no way to put “your story” into one blog post. I know she has so much more to share.  I’ve cried so many tears over people I’ve never even met since Mike was diagnosed with Glioblastoma and Dustin and Rebecca made a huge impact on me. As I look through these photos, the tears are flowing again. Rebecca, thank you so much for taking the time to share. I know others need to hear your voice and to know they aren’t alone.

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In Rebecca’s words…
“As I sit here with tears welling up in my eyes as I watch my baby boy graduate from kindergarten, my heart is so full of emotions. The moment is bittersweet. He’s grown up so much in the last few years and he’s looking and acting more and more like his daddy each day. His daddy should be here though. Dustin should be here proudly watching his son walk across the stage from Kindergarten to first grade, but he’s not. GBM took this all away from him. GBM robbed Dustin of all the experiences and proud moments of fatherhood, and GBM robbed Michael of a normal childhood growing up with his daddy proudly looking on. It’s hard to believe it’s been almost 5 years now since Dustin succumbed to that horrible beast. As you can see, the havoc it wreaked on our little family continues on to this day and will for our lifetime ahead. The pain and wounds may ease a little with time but the scars remain embedded in us forever. In what are supposed to be happy, beautiful moments in life like our son’s kindergarten graduation, these wounds reopen and become fresh scars that weep. The most memorable happy moments in life are also now some of the most bittersweet.
Becoming a widow from GBM at the age of 29 gives you a whole new perspective on life that most people never receive until late in life. I would never wish the GBM nightmare we went through on my own worst enemy, but I do wish others could have the perspective I have now.
When Dustin was diagnosed in late November of 2012, our son Michael was only 8 months old at the time. Dustin passed away just 8 months later, barely getting to see Michael complete his first year of life. The amount of suffering Dustin endured was immeasurable. I can only liken it to Jesus’ suffering on the cross. The tumors, the surgeries, the endless chemo and radiation treatments, the grueling hours of physical therapy, and the side effects from the countless medications all took their toll on him. He fought so hard to no avail, and to think he was a healthy elite athlete prior to GBM entering his life. In fact, he had run an ultramarathon (74 miles in 24 hours!!) just 2 months prior to his diagnosis. He was the epitome of excellent health and only 28 years young. GBM shows no mercy and knows no boundaries. It can send the healthiest, youngest and full of life people into heaven way before their time. Dustin wanted so badly for it to be in God’s plan for him to survive through this nightmare. To beat the beast. To watch his son grow up one day. We’ll never understand why it wasn’t. Dustin’s suffering touched so many lives though, and to this day I still receive messages from strangers telling me how much his suffering and story changed their lives. I like to think God used Dustin’s suffering to help others who needed to be woken up to Christ in their own lives. This is the peace I hold onto in making sense of it all.
I’m a changed person from this horrific journey we were forced to partake in. I have learned so much about myself and about life. Life is so short. In an instant life can change forever. You gotta live in the moment and have no regrets. It’s sooo important not to take a single day we’re given for granted, because tomorrow is never promised. In an instant GBM came in and plucked my husband, our home, our jobs, our life as we knew it. It left me widowed with a 16 month old baby to care for and no direction to go. I felt like a stranger in my own life. How could I possibly go on without my other half – the person I loved more than anything and who loved me more than anything, who when anything and everything went wrong in life, was always there to help lift me up. How?? How would I do this? Life seemed impossible now. When Dustin died I felt like I died with him. Or maybe it was because I wanted to die too. My heart literally felt like it was ripped out of my chest and was bleeding my tears. I now understand how people can die from a broken heart. Dustin and I had shared almost half our lives together. How could this be it? How could I be expected to do this alone now? And how could I possibly raise our precious baby Michael all by myself?? WHY?? Why did this have to be this way?? Life is so unfair sometimes.
I could’ve given up. I could’ve allowed GBM to indirectly take my life too. I’ll admit it, I wanted to give up. Grief can make you crazy and make you do crazy things. I probably hit my lowest of lows at that time, but hey, wouldn’t you too? But something kept me going. If it weren’t for my baby Michael, I wouldn’t have had a reason to get up in the mornings. He played a big role in my saving grace. But the biggest role was played by the big man upstairs.
On Halloween night about a month prior to Dustin’s diagnosis, we took little Michael to a trunk or treat Halloween event at a local church. There we received a tiny fortune cookie and in it was a Bible verse. “Trust in the Lord with all your heart” was written on that tiny little piece of paper. There was no way of foreseeing what would happen in the coming months and little did I know the role that little fortune cookie would play in my life shortly thereafter and for the rest of my life. I took a photo and hung the fortune on the fridge that night not really even knowing why. It just resonated with me for some reason.
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(This verse actually is from Proverbs 3:5)
The day Dustin was diagnosed I bawled my eyes out staring at that same little piece of paper. Somehow I knew God put it there just for me. I took it off the fridge and placed it in my wallet where I still have it to this day. It became, and still is, my lifeline to God. Throughout Dustin’s GBM battle I held onto that Bible verse with every ounce of faith I had. I nearly screamed in helpless frustration on a daily basis. A few times I yelled at God for making us suffer this way, begging for his mercy. The mercy I was looking for never came, but instead He kept directing me back to that bible verse and amazingly it strengthened me. One night as I wept next to Dustin’s hospital bed, I remember feeling that I had lost all sense of control. I realized that I was powerless over everything and I couldn’t fix Dustin or the situation. It was the most awful feeling I had ever had up until that point. I remember yelling and pounding my fists on the chair at God to give me something, anything. I suddenly realized He already had. He gave me that verse — Trust in the Lord with all your heart. I suddenly realized I wasn’t completely powerless. God gave me the strength and power to turn it all over to Him and place all my worries, fears, anxieties, all of it to Him. In doing so, I realized there was one thing I COULD control and that was my attitude. I could be resentful, angry, miserable, and sad, OR I could give it all to God and be hopeful and focus on the positives, however little they might’ve been. From that day on, I promised myself and the Lord that I would place my trust in Him and let Him take care of the rest. My burden was immediately lifted. It’s amazing the power God has in your life if you let Him in.
It’s all about casting your cares on the Lord. Without God in my life, I know for certain I would not have been able to withstand the storms that GBM threw at my family, and I know for certain I would not still be here today. I couldn’t have trudged through hell without God carrying me through. He gave me light in my darkness, and I chose to see it. After Dustin died I decided to take Michael around the country running races while pushing him in the stroller to raise money and awareness for brain cancer in Dustin’s memory. We checked a few things off his bucket list too. I wanted to keep Dustin’s spirit alive and I ran with Dustin’s running shoes in the bottom of the stroller so he could be with us the entire way. I ran and still do, because I can. I owe it to Dustin, Michael, and to myself.
I’ll never understand why GBM took Dustin away from all of us so soon and what the purpose was in God’s plan. But I do know that when you trust in the Lord and give it all to Him, he will lead you wherever you are supposed to be. We all have a purpose.
It’s been almost 2 years now since I married Jeff, a wonderful loving man whom God brought into mine and Michael’s life with a purpose. Michael is now a big brother to his little sister Kaia Grace, whom he adores.
Because I trusted the Lord, I was able to open my heart to love and be loved again. Out of the ashes, God has created something beautiful. The heartache of losing Dustin will never end, and I will deal with this heartache as long as I live. It certainly hasn’t nor will it ever be easy. But the beauty of it all is God gives us endless capacities to love and be loved. As I watched Michael, who is now 6 years old graduating from Kindergarten, I can’t help but smile too amongst my showers of tears. Although his angel daddy Dustin is not here physically to witness this memorable milestone in Michael’s life, not only is he always protecting and watching over him from the heavens but he’s so very proud of him. Additionally, Michael is blessed with a second daddy to love him and be loved by him. His earthly daddy Jeff will be there as a father to catch him when he falls, and help guide him through the good, the bad, and beautiful moments of life. I couldn’t be more grateful. It isn’t the ideal life or scenario, and certainly not what I had imagined for our life, but nonetheless I choose to be thankful instead of bitter for every chapter in my book of life, and I’m grateful for all the blessings He’s bestowed on us. The scars of losing Dustin will always run deep, for once you’ve loved and been loved by someone, that love always remains. However, I know for certainty that he is ultimately in the place we all want to be in the end — with our Lord and Savior Jesus Christ — and someday God will reunite us all again. Until then though, we must trust in the Lord with all our hearts and continue to live life to the fullest each and every day, no matter how tough it may be.”

Grace – Our Afflictions Eclipsed by Glory

We are two months short of Mike’s 6th year past diagnosis.  My very first blog post stated “I hope this blog ends up being an awesome testimony of God’s healing and restoration.”

I haven’t posted many updates lately.  I’ve been in a place where I just couldn’t see purpose in all of this anymore. I didn’t feel like it was worth it anymore. Not feeling like you have a voice or purpose is an awful feeling. Especially since I’ve always been such a big advocate of HOPE.  I reached a place where individually I felt like my life was somewhat hopeless and was being wasted. I didn’t feel like I was living fully anymore, I was simply going through the motions.   I didn’t even know what to hope for anymore if I did dare to hope for anything.  To put it simply, I’ve just felt like a mess and was hurting a lot.

As I’m typing this, things have changed for the better since the darkest of the days.

I’m trying to figure out what I’m supposed to share, when, how and where. I’m not sure if I should be writing, speaking, etc. But I do know that I’m not going to sit back and let this past 6 years be for nothing. I’m not going to stop believing that there is purpose in this hardship. That I have purpose.

Many have heard 2 Corinthians 12:9 “My grace is sufficient for you, for my power is made perfect in your weakness” But I want to back it up to 7 and 8 where Paul speaks of the thorn in his flesh, a messenger of satan, to torment him. Paul pleaded three times with the Lord to take it away from him. How many of us have something that TORMENTS us? I know I have had many things in my life that I BEGGED God to take away. God’s response was not to take it away. God said “My GRACE is SUFFICIENT for you, my power is made perfect in your weakness.”  I will be the first to admit that this has been a season of weakness for me. But Grace. My afflictions eclipsed by His glory.

I will never forget sitting in front of my husband’s oncologists office in 2012 wondering what we have done wrong to be facing a terminal cancer diagnosis. Certainly a good Christian would not be diagnosed with cancer. Certainly this is a direct result of sin. I opened my bible app and the verse that day was John 16:33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”  He never promised that we would have an easy life! He actually TELLS us we WILL have trouble! He DID HOWEVER, promise us GRACE. Grace can get us through all circumstances.

As simple as that sounds, its not always something that feels attainable. I don’t want to mislead anyone into thinking I have this all figured out. Being a caregiver is hard.

God’s grace shows up IN OUR WEAKNESS. IN OUR HURT. IN OUR BROKENNESS. IN OUR IMPERFECTIONS. IN OUR MISTAKES. God’s grace can eclipse all of that!

Grace allows us to still have thankfulness, to still have joy, to still have peace…even in the midst of our hardest days. His grace and forgiveness washes away even our biggest mistakes.  Or maybe sometimes Grace just realistically looks like “Hey, I survived today. I had patience today. I had peace today. Well, maybe not even in every moment…but I was those things when I didn’t think I could be.” I think we sometimes have a hard time really comprehending the big picture. For me personally, when I think of Grace….I think of surviving moments that felt helpless. I think of coming up for air when I felt like I was drowning and didn’t have the energy to even tread water. I think of the days I was able to remain calm and patient when everything around me was spiraling out of control. 

My husband was a Marine for 21 years. Two years after he retired, a month after our youngest turned 3, he woke up one day severely confused to the point that he could not even function. He had taken Thursday day off work to blow bubbles with our youngest daughter before leaving the next day on a business trip to Japan. He was really confused that morning though. He was looking in the fridge for his socks and said he needed help getting dressed. I knew something was wrong, so I loaded the two of them up and went to the ER. Initially they realized he had no right peripheral vision and they ordered a CT Scan. They found a mass on his brain and ordered an MRI. That night we spoke to a brain surgeon and were told that we were going to stay the night while they got his brain swelling under control and then we should go home and get our affairs in order and prepare for him to have brain surgery the next week.  The doctor suspected it was a high grade cancer. To make a long story short, he was diagnosed with Glioblastoma which has a prognosis of a weeks to a few months with no treatment, or maybe about a year WITH treatment. People don’t survive this cancer generally speaking. Less than 4% live to see 5 years past diagnosis.

Mike went on hospice in January 2015. While he was on hospice, our 15 year old became pregnant. That entire situation was a huge lesson for me on grace. How to give it and how to walk in it.  In Dec 2015 our grandbaby was born while Mike was still on hospice. After a year and a half on hospice, Mike was removed.  He is much like a dementia patient as he struggles with self care and memory. He requires 24 hour supervision and assistance. Through all the struggles, all the stress, all the overwhelming moments, God’s grace has sustained me.

God’s grace is bigger than our mistakes. And have I ever made mistakes.

God’s grace is bigger than our brokenness.  And I am the first to admit I’m broken.

God’s grace is bigger than our mess. I am a mess at times. I’ve made messy decisions…I don’t have all this figured out quite yet.

God’s grace is bigger than our PAIN. And let me tell you, I’ve experienced pain this year. All the emotional pain of the last 6 years hit me hard and took me on a downward spiral. I can’t be the only one who has experienced this. Nothing specifically changed on the outside, but on the inside all of a sudden I just felt Raw. Broken. Hopeless.

At my lowest, as God always does, he swooped in and saved me… Again.  And I have a feeling He will do this again and again and again.

The Session this week is called “Call it Grace” and those three words are what inspired this entire blog post. Log into Facebook and check us out April 21st at about 7pm Eastern time and hear more about the life saving power of grace.

 

 

 

 

 


Glioblastoma – Long Term Survival

This information is easy to find when newly diagnosed with Glioblastoma:
“The median survival of glioblastoma patients is approximately 12 months. However, 3-5% of the patients survives for more than 3 years and are referred to as long-term survivors.”
 
This part, however, somehow I never came across until Mike experienced it:
“When long-term survival does occur it is often accompanied by severe treatment-induced dementia.”
 
I remember so clearly Mike talking about the “life reset button” that he felt he was given. If he had known the future, he probably would have been tempted to opt out of treatment. I’m glad he didn’t know because he wouldn’t have understood the plans God had for him or understood the lives he’d touch by his tenacity to face each day.
 
By the time a person is diagnosed with Glioblastoma, their ability to research and advocate for themselves is usually pretty limited. Due to brain swelling, Mike was severely confused. I’ve walked many people through the first weeks of diagnosis…the hard part is knowing that long term survival is rare…and even if they are “blessed” with long term survival, chances are their lives will never be the same. I’m about as thankful as they come…but some days don’t feel so blessed. That’s the reality of what we are living.
 
May was brain cancer awareness month and I’ve learned that GBM is more common than I ever realized. God placed in our path a widow who had walked out GBM with her husband before Mike’s pathology even came back. She was a friend of a friend. Because of that, I felt two steps ahead because I was able to research. Sitting in the doctors office and hearing GBM – I already knew what we were up against and I had already done research. When the surgeon told me NOT to go to Duke or ask for a second opinion, I already had my mind made up that we were going. Had I not already done the research, I might have never pursued the brain tumor center at Duke.
 
Just some random thoughts as Mike’s official 4 year date of his first surgery and diagnosis is coming up. 4 years ago he had a deadly brain tumor that was growing and causing havoc, we just didn’t know the extent of what was going on in his head just yet.

 July 2015 – Glioblastoma Survivor  

 I woke up Wednesday morning to a private message from someone praying joy, peace and supernatural energy into my day and praying for calmness and a pain free day for Mike.  I saw that prayer answered as we made it to church as a family that evening. It’s still rare for Mike to get out.  Most days this week he has slept until evening at least. Overnight was rough Tuesday night. He was awake hourly saying he wasn’t ok and that he was feeling bad and his head was hurting pretty bad. I thought for sure he would sleep all day to catch up on the rest. But no, he was up and wanting to be busy. The prayer of a friend in the morning did make a difference! 

When we do randomly get out to church, it’s the best feeling to be welcomed with open arms and lots of love. I’m thankful for all the people in our lives who simply love us when we can show up and continue to pray for us when we don’t. 

    
   

  
God continues to show me the miraculous healing and restoration that has taken place in our lives. 

I don’t doubt the blessings in my life for one second! Yes, Mike’s cancer is so much harder to deal with on so many levels than I could ever even try to explain. Some days I feel spent and broken. But at the same time, even on my broken days, I’m stronger than ever. Mike’s bad days are bad but his smile is genuine and his love runs deep. 

My heart feels like it gets ripped out of my chest almost daily….but there is joy even in the midst of all the hardships and heartache.  

Even in the trials and tribulations, we are thankful to be living an abundant life. 

 
Speaking of JOY, I just realized that I haven’t announced this on the blog yet,…..our teen daughter is expecting a baby girl and she is due Dec 30th. As you know, our daughter is 15 so this was a huge shock, but we choose JOY and we choose LIFE.    We choose to embrace this new little life  ….So there’s that. 🙂  This photo is from a gender reveal party that I threw for them to find out the gender. All the pink confetti revealed to them the gender!  


Insight into the GBM rollercoaster..

February 2nd – Mikes health is such a roller coaster. After about 40 hours in bed, he’s up and feisty. Feisty is good. It’s so crazy how he will be barely functional and then bounces back. It makes me so thankful for the good days.

February 3rd – Too much roller coaster: I was so happy that he was awake and feisty yesterday because he had a rough 40 hours, and this evening he is unable to form any words at all, is confused and just makes sounds when trying to say something and gets agitated. I’m trying to get him to sleep but he refuses to stay in bed. He is dragging his right side worse than ever but refuses help and refuses to lay down. He’s wandering around the house very unsteadily as I stay close to make sure he doesn’t get hurt. Thankfully my mom is here laying with Kenzie. Reality sometimes just sucks and isn’t pleasant at all. Praying for peace for my husband tonight…


Hospice – Glioblastoma Update

I look around and see the Kindergarten homework, sparkly shoes, silly artwork, video games and funky teenage combat boots. Today is a half day for the kids leading into a 4 day weekend.  Before cancer entered our lives we always left town on long weekends.  Long weekends were always our time to reconnect, re-energize and have some adventure.  Instead of packing up for a weekend at the Outer Banks or some other destination, today Mike was officially admitted into home hospice.

What makes this especially difficult is that it isn’t something I can talk out with my husband. My person.  The one who always helped me sort out big decisions like this.  For awhile Mike hasn’t been able to comprehend his illness. He hasn’t understood why his head hurts or why he can’t “think right” as he says it.  He doesn’t remember the brain surgery, radiation or chemo most days.  The last several appts we went to for treatment, he didn’t understand why he was there getting an IV or what medication he was getting and why, even when we told him over and over again.  The last appt he told me he was tired and didn’t want to do this.  It has taken every bit of him to just walk into the office lately and he reluctantly accepted a wheelchair to get down the hallway after we got into the office.  It has been months since he left the house for something other than doctor appts.  The ugly reality is that I don’t even remember the last appt when he was able to walk into the bathroom on his own and provide the urine sample in the cup without my assistance.  Not a glamorous piece of information, I know…but that’s the reality of it.

At this point he doesn’t remember conversations. He will ask me every two minutes where the kids are, even in the middle of the night if he wakes up.  Most people would just know that their kids are in their beds under the same roof, but in his mind that logic just isn’t there. Talking to Mike about his treatment options have only left him in a state of confusion and distress each time.  Any conversations about brain surgery or his diagnosis just leave him devastated as if he is hearing the diagnosis for the first time.  I’m hesitant to post this because I do not want anyone talking gloomy to him or mentioning the word hospice.  This may end up being a very private leg of this journey for our family.  He is fine with the nurses that come into the home, and he is relieved to know that he doesn’t have to leave the house for doctor appointments anymore, but I do not want him brought down by sad conversations or devastated at the word hospice being said to him.  That is not a moment of sadness that he needs to feel over and over again, and HOPE and POSITIVITY is important.  We will let him live each day to the fullest with the most comfort possible, physically and emotionally.  I will hold onto hope of a miracle, even as we are faced with hardships and an obvious decline.  I will strive to rest in confidence that each day is already paved out before us.

**Just so we are clear since I am sharing this, Do NOT have a conversation with him about hospice.

At this point his body and brain are functioning so poorly that comfort care is the best goal for him.  Since there is nothing further we can do, it’s in God’s hands.  In God’s hands isn’t a bad place to be.  God is bigger than cancer, bigger than treatment, bigger than the damage we have seen.


A video recap on this Glioblastoma Multiforme Journey! GBM Survivor

Check out this video recap of the past two years on this roller coaster called brain cancer…look what the Lord has done!  How fitting that this happens to be my 100th post!