Tag Archives: brain cancer awareness

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.

 


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

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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/


May 31, 2015  – Glioblastoma &  Eternity 

I’m amazed. I’ve said over and over again that if brain cancer is what gets Mike to heaven, then it is worth it even if it cuts Mike’s life short on earth. The pastor tonight expressed the same thoughts about his uncle who died of brain cancer and I for a second thought “Whoa! I said that. Did he read my blog?!” (Ha!) Seriously, it felt like he repeated word for word what I’ve said to many close to us. Then I realized that the pastor and I both simply had the same revelation and I felt such confirmation over something that has stirred in my heart since the beginning. The big picture is eternity. That is huge! I’ve said that maybe God needs to take Mike young for him to spend eternity in heaven, that maybe if he were to live 40 more years that he wouldn’t know God and wouldn’t see heaven. Knowing God and getting to heaven is so much more important than the number of days on earth. Brain cancer has saved Mikes life. His eternal life.

To see the video of the service, skip to this post.

It makes me think of times that I have offered to take my kids somewhere. There have been times I’ve said “Come on, we are going now or we aren’t going at all.” Even if Mike were to die tomorrow, I would proclaim without a doubt that we saw miracles. I would be heartbroken but my heart would rejoice at the miracles we have been blessed with. The blessings that God has had the opportunity to give us because of brain cancer has outweighed all the heartache and all the struggle. We feel deeper and see beauty that we never could have seen. I know that if Mike were standing in 2012 and God showed him how the three years would play out and handed him a brain cancer card and gave him a choice, he would play the card. Even typing that seems crazy because I don’t think I could live some of those moments over again. It blows my mind, but it’s the truth! When Mike understood that he had brain cancer he often said that it was a blessing and that it was a “life reset button.” He now doesn’t understand that he has brain cancer. He can’t relate one moment to the next. He asked 15-20 times during church where his wallet was. Before we left the house he was brushing his hair with a toothbrush. He looks out the window at least 5 times a day and asks if we got a new vehicle. He gets lost in our house. But when he understood that he had brain cancer, he was thankful for the changes brain cancer brought in a way that’s hard to explain without feeling like I’m insane and typing gibberish. There’s a peace that brings me to remember that.  He often called his brain cancer “a means to an end.”   We all want to see miracles in real life. They sound awesome right? We are all “yay, miracles!” You know what that means though? It means you have to be in a desperate, empty, painful and hopeless place. A place where you are out of options. A place where you have absolutely no control. That’s the place miracles happen. Miracles happen in heartache and brokenness. It’s not a pretty place to be. But you know what else? It’s worth it.

You are looking at a family that has been miraculously healed.    


Valentines Day – Handwritten Engraved Necklaces, photos of our GBM warrior, and a detailed update

Our Valentines Day was nice. Mike felt okay for a few moments, but not for long throughout the day.  The girls and I went to a florist and picked out a couple of flowers to make a bouquet and I had Mike give the kids these gifts that we had made back in September.  He has lost his ability to read and write, so these gifts of handwritten engraved necklaces, a keychain and wooden “I love you” boxes are very special.  Kayla actually had to wait until this morning for Mike to sit with her for her to open her gifts because he wasn’t feeling well last night and she wasn’t here when the other kids opened theirs.

I don’t remember where I bought the boxes from, but the necklaces came from the following link: https://www.etsy.com/listing/156050883/custom-handwriting-necklace-with-the?ref=shop_home_feat_1

This is the flower the girls picked out for me…

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And I picked out my favorite flower….

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We ended up with a nice little bouquet.

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Most days Mike really has to muster up the strength to have even just a few good moments.  He often sits with his head in his hands in between those good moments.

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Kenzie wanted Red Robin for lunch, but we haven’t been able to go to a restaurant since August.  Mike doesn’t leave the house at all anymore.  About a month ago he left the house to go for a ride to the Krispy Kreme drive thru, and that is when we realized its just too hard and the enjoyment isn’t there.  Red Robin is just a half a mile from our house, so I ordered to go and brought it to them.  Mike wasn’t feeling well enough to sit at the table, so we all joined him in the room.  Most of the time he is in our bedroom still, but there are times that the adjustable hospital bed is needed to help him sit up.

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As far as whats going on with Mike these days…well, he has some really great moments still, and I’m so thankful for that.  That is what I dwell on day to day – the good moments.  But in all reality, he has some really bad moments too.  I’d say the pain is pretty well managed, so that is an improvement.  Its just the random brain shutdowns that are difficult. (for lack of a better way to explain it)  He can be doing so well one moment, and then have problems the next. For instance, last night all of a sudden he said “I can’t see.” When those things happen, (its not the first time his sight has gone)  I go into comfort mode.  I do whatever I can to help him have peace.  These moments are scary for him I’m sure. I tend to try to get him to the bed and try to get him to sleep when the scary things are happening and I hope that he can wake up feeling better.  We also wanders like an Alzheimer’s patient.  Other things that go during that brain shut down mode are speech, and sometimes the ability to stand or sit up. Sometimes he experiences just one of these things, sometimes all of them together, along with the Alzheimers/dementia type of behavior.  The hardest moments are when he’s having the dementia behavior along with the physical inability to physically be steady.  There have been times that he refuses to stay in the bed, yet he isn’t safe trying to get up.  This doesn’t stop him from trying though, and he has had falls.  Its really hard to describe, but my hope is that by trying to share our experiences I’m giving someone some insight and that it will help someone else in their care giving journey.  Sometimes the fact that we know that it is “normal” within the realm of GBM patients helps us as caregivers to get through the hardest moments and helps us know how to better help our loved ones.  I don’t have an answer on how to get him to stay in bed, but the biggest relief is when I can make sure he isn’t anxious, scared or extremely agitated.  There are medications to calm our loved ones so if you are experiencing this, just share the details with your doctor of what is happening, and they should be able to prescribe something to comfort the patient.


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.


Grey Matters Keychain – Brain Cancer Awareness

I created this “Grey Matters” keychain for Etsy Shop and absolutely love it!  I will be making a necklace too, but I can’t seem to find the time for ALL the homemade jewelry and personalized necklace ideas and things I want to make.  The funniest part is that I spend just as much photographing my creations as I do creating them!  I’m loving this crafty therapy!!!  The fact that I’m able to sell my items in our new Etsy Shop makes it possible for me to continue to buy supplies and to continue to create!  I’m so thankful and have been spending a lot of time in prayer, just in awe and feeling blessed.  It’s a good feeling.  Mike is really proud of me and my favorite part of the day is when he wakes up and asks what I’m doing and I can say “I’m working.”  Then I get him a cup of coffee and he sits with me while I work on orders and package them up for shipping. This week he says I’m like Santa’s elf and he makes comments about it looking like Santa’s Workshop. I think thats mainly because he sees me with the hammer stamping out letters.   Kayla and I are about to have a late night working on some orders, so I have to run.  This is such good crafty therapy for me.  I just wanted to share this item because I love it. I love the thought of spreading brain cancer awareness, and specifically glioblastoma awareness.

Whatever I do, I do it with my whole heart and one blog post seems to overlap the other when I’m posting to either The Creative Bond or The GBM Blog.  This topic relates so much to GBM and to our daily life.  There is a giveaway going on at Mom Explores Virginia Beach right now on any item in the Etsy Shop, so if you are interested in a keychain or necklace, go enter the giveaway!

**Update, I’ve decided to not pursue the Etsy shop at this time so I have closed the shop.  I don’t have time for it.**

Grey Matters

Grey Matters