Tag Archives: Glioblastoma

Look what the Lord has done!

I had an opportunity to hang out with Revival Worship Movement at the Chesapeake Jubilee this past weekend. If you know me or have read this blog, you know I can go on and on telling our story. I have a lot of words to say! There are SO many layers to it and it’s actually 22 years in the making. It all started with a prophesy 22 years ago when God said “I will turn the heart of one around. Your prayers regarding his life will come to pass.” We’ve seen physical healing, family healing and heart healing. As I stood there during that worship song, I realized God didn’t want me to beef up our testimony with lots of words this time. This time I was just to share briefly enough to say “Look what the Lord has done!” I don’t think I’ve EVER summed up our testimony in less than 2 minutes, even with a random person at the grocery store. It was a simple message of hope. Thanks to Terrance Howell and Revival Worship Movement for giving us a chance to share what God has done.

Untainted Love by Revival Worship Movement is available for purchase at the following links!  Amazon  Google Play  Itunes  Spotify Tidalshauna


Because May is brain tumor/brain cancer awareness month…and because I look back at the last 6 years since diagnosis and say “Look what the Lord has done.” 

We aren’t any more worthy than anyone else and I don’t understand why I’ve seen so many amazing people lose their lives here in earth to Glioblastoma and why Mike is alive – I do know many lives have been touched and I knew in 2012 to start my blog so people could follow because I felt that God was going to use our situation for something big. I just felt like there was a bigger picture all along. I accepted the prognosis. I prepared, I planned a funeral, we made sure all affairs were in order. We found peace. I have gone through some lows and have been exhausted too, but 90% of the time in the past 6 years I’ve held strong.

Mike’s surgeon specifically told me not to even bother with a second opinion. That’s a huge part of my memories and a huge part of knowing God was in this from the beginning. I’m a people pleaser and I had to learn to stand up and fight back. To be an advocate for Mike and not accept just whatever I was told. His surgeon was amazing and I know every person we dealt with had a purpose for our lives. But I remember by discharge I already knew I was taking him to Duke and I had kinda asked the surgeon his thoughts on a second opinion at Duke or MD Anderson before starting treatment – he said no, not to even consider it. To contact a local doctor – which by the way, there is no a treatment that will cure GBM – chemo and radiation is just a way to buy some more months of survival. God put us on someone’s heart before Mikes surgery even happened!! She gave me a heads up on GBM and told me about how amazing Duke was before we had a diagnosis, I ALREADY knew that if I heard “GBM” that we were going to Duke for more options. She told me she knew Duke gave her extra precious months with her husband before he passed away. The Brain Tumor Center at Duke gives hope and options sometimes when other doctors don’t. Sometimes they just can’t, but I was told to get there fast (before starting any other treatment) for the best chances of having options. 

GBM is a horrible diagnosis. But it wasn’t a death sentence for Mike. Even if he would have died within that first year, GBM brought Mike into a place of eternal life. And not only Mike! So many lives have been led to God through this. CA71A330-7CDC-4F1F-A466-28CF909484E8


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.

 

 

 

 

 


Inspiration

I’ve realized lately that being an inspiration really drives me. Not in a way that I want attention or that I feel like I’m receiving some kind of praise, but more in the sense of wanting others to be better, to feel better, and to have hope.  If I can share my experiences and if that sharing can result in others having more hope or for them to find the energy to push through something they didn’t think they could face, or for them to have a desire to pay something forward and help someone else – that makes me want to share more. I want to see lives improved, refreshed, and uplifted.

I haven’t been sharing a lot lately for several reasons. Our life doesn’t change much day to day and there aren’t medical updates. In the beginning I was learning how to navigate Glioblastoma and I had three purposes for this blog – To give God the glory for the healing that I believed was going to happen, to keep friends and family updated, and to help others navigate their diagnosis and give them hope and inspiration.

Our experience with Glioblastoma is not a normal experience because Mike is still here 4.5 years later.  Now I’m learning to navigate an entirely unplanned situation.  I like to plan and I like to have an idea of what my future holds. Even when the prognosis was scary, there was comfort in planning.  I had to plan for him to pass away as thats the normal outcome of someone diagnosed with Glioblastoma. I have learned that I have no idea what life has in store for my family.

….Then I realized that life would be hard either way. That losing him would be unbearable…and I also realized that this new normal wasn’t going to be easy or full of enjoyment either. I’ve had to embrace that its ok to feel that way. That I shouldn’t feel guilty for grieving what we had or what we thought our future held. I did lose a lot with his diagnosis. He is here but there are many things that we grieve that are no longer here.  I had to realize that I couldn’t prepare for the future.  I have to just face it each day and navigate the best I can. I’m a wife in my 30’s – but I feel like I’m living a lifestyle of someone much older. He’s like a dementia/alzheimers patient. Going from having a husband who was a strong head of household in many ways to now being the head of the household has really been a transition for me.  All responsibilities fall on me. I now have a husband who doesn’t understand how to pour himself a glass of milk.

I’ve grown so much through this experience and I want others to know that whatever it is that you are facing – you can do it.

Having a husband on hospice and a 15 year old daughter who was pregnant felt impossible.  We did it and we are still doing it.  I could have given up. I could have decided I couldn’t face the next day. But I didn’t. I fought through to see the joy that I knew was coming. I’ve always held onto the thought that joy comes…if you hold on long enough, you will have a moment that made all the hardship worth fighting through.

Establishing a successful business felt impossible with the limitations of being homebound and taking care of such a hectic family – but I’ve made Trainer with LuLaRoe and have been absolutely blown away with the success of my business.  For many months I thought “Ok, I will keep putting one foot in front of the other until I fail, and then I will throw in the towel.” I gave myself permission to fail before I even started. In my mind, I wanted to go ahead and try and get the failure over with so I could get that desire to try behind me.  I knew I wanted to try selling LuLaRoe. I figured I’d fail. Guess what…I’m 6 months in and instead of bracing for failure, I’m now excited to continue to build my business.  Sometimes you have to face a situation with tenacity. You have to dig deep and you have to fight to get through some things.

So here I am – hoping that I can give  you some inspiration to face those things that feel impossible. New diagnosis, scary prognosis, personal situations – whatever it is, you’ve got this!

15823018_10208348923583996_8745954660082840080_n

 


Christmas Baby!

I am sorry that it has taken me so long to update. Things have been crazy, as you can imagine. I’m so proud to announce that our Grandbaby was born on December 25, 2015!  She is 3 weeks old and we all love her so much. The labor and deliver went smoothly and our daughter was amazing throughout the whole process. I was able to be in the room for the entire labor and delivery because my sister, brother and law and mom all stayed at our house to take care of Mike and the other two kids. Another cool fun fact is that they came home from the hospital ON MIKE’S BIRTHDAY!  What a birthday gift!

As you look at these photos, I hope that you see God’s grace.  I’m so proud of our daughter for choosing life.  Becoming pregnant at 15 was overwhelming, but God’s grace has really been present through this entire situation.  We are closer than we have ever been as a family and we have more joy than we have ever had. I am devoted to guiding Kayla in  motherhood and making sure this sweet baby is loved and provided for. We’ve got this.

Mike was able to meet his grandbaby in the hospital and I will share the video that captured him meeting her. The very last few second is the best.

Another exciting fact is that this month we celebrate that Mike has been on hospice for TWELVE MONTHS!  Praise God!  He is 43 months PAST GBM DIAGNOSIS!

Caralyn Elizabeth Emmons born December 25, 2015. 7lbs 2oz, 19 inches long.

 


GBM caregiver thoughts and update – 39 months past diagnosis

I’m enjoying being a Scentsy consultant because its something I can do mostly from home and it brings in a little bit of income. (and it brings in a lot of my favorite product! lol)  I’m thankful to have some busy work to do this morning as I sort orders and organize parties. I’ve always been one to stay busy, so not being able to leave the house due to Mike’s health is a huge struggle for me. At one point in our marriage, Mike was deployed to Iraq for a year so I was raising the kids alone that year, I worked full time, and attended college online full time…since then I have learned to find a healthier balance of not always having to be so busy, but I still don’t do well staying still for long.  I’m constantly tempted to continue my college education online again, but with our teenager having a baby coming soon, I just don’t know how much I can handle at a time.  Life is guaranteed to be busy for awhile. I’m so guilty of taking on too much and then being overwhelmed.  I’m thinking maybe I actually haven’t found that healthy balance because as I typed that I thought “I should do it, I should sign up for classes online!”  It’s hard because I know I need to be here to take care of Mike now and he can’t be left alone, but I also struggle with all the uncertainty in my future.  Looking back, none of my “future” plans have ever worked out the way I intended them to.  I can’t help but feel like I should be doing something now to plan for the future…but I don’t know how to plan for the unknown and try to set a foundation for anything when my entire life is on pause in a way as unsettling as the sole provider having a terminal illness… Mike has always been the financial stability in our family, even when I did work full time.  Being a military family and moving often, that’s just how it played out for us.

Mike is doing well.  I’m amazed daily at the fact that he is alive and he has been out of bed every day for at least 4 hours for the last couple of weeks. Some days he’s up for an entire 9 hour day.  He does have some days when he sleeps until evening, but he hasn’t slept all day for days in a row lately like he has before.  His confusion is bad some days, but he has never forgotten who are are, so I know it could be worse.  Just last night he was trying to convince me to buy him a motorcycle even though he hasn’t driven in years.  He had a fall earlier this week and feels like he bruised a rib.  There is no keeping him still though, he is determined to walk around in the yard every day.

As much as I might get sad or frustrated with the situation, deep down, I always know that it is an honor and privilege to take care of my husband.


Glioblastoma Survivor 2015 – September

I don’t want to ever feel like I glamorize brain cancer, or that I make it all look like it was all rainbows and butterflies. I focus on the good in life, so its natural for me to want to share the good, but I try to be intentional and honest in sharing the reality of the bad days of brain cancer too.  If you have read my posts you know that I have such a thankful heart and that I do feel honestly blessed, even with this hard life we are living.  I try to share the hard stuff, but I never quite feel like I can find words to even scratch the surface of how hard the days can be. I don’t usually blog unless I feel something really heavy on my heart, and this morning I have that feeling. Someone needs to read this.   I’m not exaggerating when I say that some days I have thought that the days are impossible.  Psalm 30:5 helps me in those times when I feel like life is just darkness and I need to cling to something to get me through the darkness.  God promises us morning after mourning.  I’ve experienced many seasons of darkness and mourning and have eventually seen the joy of a new day or new morning of joy. I hope that makes sense in the way I worded it.  I know that there tends to be a theme throughout my blog and that I tend to share the same things more than once, but I just share whats on my heart when I sit down to write.  I know that people don’t always read back to previous posts, so I write about what I think someone needs to read today.

I know how it feels at diagnosis to realize that only about 2% will live to see 3 years. The odds have always been against us, from the moment we were given the diagnosis.  I’d love to say that it is because of prayers Mike is here, but I’ve also seen mighty men of God who were surrounded in prayer die from GBM.  I’ve seen a child cry out in prayer to God asking God to save his Daddy in front of a church full of people in agreement.  I don’t know why those prayers weren’t answered, and I don’t try to have all the answers on healing.  I’ll be honest, there have been times that I’ve thought “Wow, if God didn’t heal that mighty man of God, then we don’t have a chance.”  I learned really quick that being worthy or not has nothing to do with it. God’s plan is not something we will ever understand. Dying from brain cancer means that there is the joy and peace of heaven ahead for that person.  There is sorrow for us who remain on earth, but pure joy for those who enter the gates of heaven.

I know how it feels to have the diagnosis in your family and to have to wonder if this will be the last summer, Christmas or birthday together.  I know how it feels to want to climb in bed and pull the covers over my head and not to want to face any of this.  I know how it feels to think “Next year at this time life will be different and he probably won’t be here.”  Mike was never expected to live this long.  I’ve always tried to find a healthy balance of facing reality and trying to prepare myself for the worst while also having a healthy hope for the future and for healing and restoration.  I have already chosen a funeral home, cemetery, casket and prepared his dress blues.  Trust me, I don’t take this time we have had for granted. I realize what a gift each day and each good moment is. We have experienced 41 days of radiations, 2 years of constant chemo and weekly doctors visits knowing that we would never ring that bell in the cancer center like so many patients do after completing their treatment plan, (Glio famililes, you aren’t alone!) decadron, anger, weight gain, then 100 lbs of weight loss, seizures, falls, ambulances, swelling, incontinence, hospital stays, feelings of isolation, confusion, short term memory loss, sleeping for days, Mike not even speaking a word for 8 days at a time, and all kinds of daily battles that I can’t even put into words.  I have been home bound with my husband for weeks and months at a time, not even being able to drive my kids to school, go grocery shopping, or take them to appts because he couldn’t get out of bed and couldn’t be left alone.  Hospice has brought us some calm in the storm. So when you see my posts about being happy, blessed and thankful, know there is so much history behind why I’m so happy and thankful for a good moment.  Please, if you have a good moment with your loved one, be in that moment…grab a camera a capture it.  Don’t let the reality of this diagnosis steal a single moment that has the potential to be a moment of joy.

This last week we spent a week at a beach house with a pool in the Outer Banks and it was so amazing. We are so thankful to The Semper Fi Fund, Dreams for Veterans, and Seaside Vacations for their roles in making the week happen.  Mike faces so much confusion, pain, and scary days, so seeing this spark in his eyes and pure happiness on his face says more than any words than I can come up with. For years we felt like we didn’t deserve to request a dream, so we never did request the dreams that Mike initially had in mind.  Initially when I brought up the idea of submitting for a dream, Mike talked about how he always wanted to see Montana (so random, lol!) or go to a Saints game and have a meet and greet with Drew Brees.  Meet and greets require travel, so now that Mike is at the level of functionality and comprehension that he is at, travel isn’t a good idea for him.  Once he reached hospice I was inspired by seeing a few other families who made their loved ones dreams come true.  I realized that I wished we had requested it earlier and I wished that we would have done something when he was more able.  I also realized that his dream at this moment is simply to spend quality time with his family, so we requested to spend time in a house at the beach. I realized that requesting a dream wasn’t taking advantage in a bad way and it was silly to feel like we didn’t deserve it.  All summer he has wanted to get out and do things, but he doesn’t last long once out of the house, so I knew he needed a get away that would allow him to rest when needed.  I did some research to find a house with a pool because I knew that we wouldn’t be able to leave the house much and the kids would need to have an outlet for their energy.  I always feel guilty asking for anything, but I told myself we do deserve to try to squeeze a lifetime of memories into whatever time we have left.

Glioblastoma Survivor 2015

Seaside Vacations - Dream Foundation

Seaside Vacations - Outer Banks

2015.05.22-1-2 IMG_8758 IMG_8836 IMG_8857 IMG_8958

__IMG_5034

If you have airline rewards, but not quite enough for a flight, you might want to consider donating them to The Dream Foundation!

http://www.dreamfoundation.org/giving/