Wednesday, September 24, 2014

The MRI Results: 9/24/2014

I can't even begin to describe the anxiety, fear and pure stress I feel on the days where we find out Dad's MRI results. I'm a huge mess. 

It's something you constantly think about all day, no matter how busy of a day you have, no matter how many distractions you may have, it's there, in the back of your mind. You want to hear the words, "Everything looks good!", and you so badly fear the words, "Well, it doesn't look good." Walking into the Cancer Clinic is something I do every 2 weeks, but this doesn't mean the same gut wrenching feeling doesn't come back every 2 weeks, and even more so on the days we get Dad's MRI results. You walk into a place you never imagined you would be, you walk into a place with people who all never imagined they too would be there, and each time it feels surreal. 

Thankfully, Dad's MRI results were good! In March 2014, Dad's MRI results showed progression- the cancer was back...or so they thought. Now, almost 1 year post-diagnosis, Dad's MRI is stabilizing, leading the Oncologist to believe the "progression" in March, was due to the radiation treatment- something called psuedoprogression. The MRI is stable. Stable is good. Stable is GREAT!

Dad's cancer can come back at any time. Statistically, 100% of Glioblastomas recur within 6-8 months, we are reaching our 1 year mark. We are so incredibly blessed!

So now, we stay the course. We continue with the chemo, with another round starting in about 2 weeks, and we continue with the Avastin treatment- both are not known to cause any sort of problems when taken long term. 

Do I think the anxiety, fear, and pure stress will ever go away when I walk into the Cancer Clinic? Probably not. I still feel sick to my stomach each time I walk into that place, but I'm reminded each time what a blessing it's all been- what a blessing it is to be surrounded by such amazing people at the Cancer Clinic.  

On Monday, my devotional was absolutely fitting for my thoughts and feelings for this week ahead. 
"Trust ME and Refuse to Worry." POWERFUL words.
"I am your Strength and Song. You are feeling wobbly this morning, looking at difficult times looming ahead, measuring them against your own strength. However, they are not today's tasks- or even tomorrow's. So leave them in the future and come home to the present...I can empower you to handle each task as it comes...I can give you Joy as you work alongside Me."

So today's post is one about hope, faith and pure joy! We are so hopeful that Dad will continue to not be a statistic with Brain Cancer, we are filled with faith in this path so perfectly created for us, and we celebrate the joy of each and every day we are given- as each day is a true gift. 

Continue praying, as we continue fighting to BTHO Brain Cancer!



Friday, September 19, 2014

The Secret Of Life: Dad Update 9/19/2014

This week marks the annual Washington County Fair in Brenham, Texas. A time of year which has always meant so much to Dad, and a time of year I look forward to all year long. This year has been a bit different, as Dad was unable to help some of the exhibitors with their animals, and was not able to serve on a fair committee. But, just because Lar couldn't do exactly what he did at this time last year, doesn't mean he hasn't been enjoying the fair right along with us! I absolutely love seeing him out and talking with old friends, it brings a huge smile to my face to see him enjoying the fair this year. 

It's strange to think that just one year ago our lives seemed normal, some would even say perfect- oh how wrong we would be! How wrong we were to think that we had it all figured out, that God had blessed our family in so many ways, when really, we had just barely figured out the secret to life.

It's been 11.5 months since Dad's seizure, and in those 11.5 months we've just barely seen the amount of love that God can show us, and we've just barely seen the amount of love friends and family can show us. So what's this secret of life we've figured out? 

You're stronger than you ever imaged you could be. You're more loved than you ever imaged you could be. And you're impacting others more than you ever imaged. 

Strength. Webster defines strength as, "the ability to resist being moved or broken by a force." What a perfect way to describe Dad! He's resisted feeling sorry for himself, he's resisted being broken by cancer, and he's resisted the urge to be alone in this fight. People comment all the time about how strong our family has been throughout it all, that our strength is amazing. As much as I appreciate those sweet words, I have to give it all to two of the most important people in my life: God and Dad. I've seen Dad's faith shine through his fight, and it's inspired me to have this strength to get through it all, to resist being broken by a force like cancer. 

To say we have felt the love since day 1 of Dad's fight would be such a huge understatement, as we have been completely and fully embraced by so many people- some life long friends, others strangers turned into friends, that have related to our story. I know for a fact our eyes have just barely been open to the HUGE amount of love being poured into our fight. This week has been such a humbling experience to have so many people ask about Dad and tell me they are praying for him. It just makes my heart so full to hear what a positive and amazing impact Dad has had on so many people throughout the years, especially at the fair- a place that holds such a special place in Dad's heart. 

As Faith Hill sings in her song, "The Secret of Life":
"The secret of life, is there ain't no secret,

And you don't get your money back."

The secret to life isn't a secret. It's taking it all one day at a time, sometimes one moment at a time, and embracing it all. We can't change our situation, so instead we change our attitude. There's no turning back, no giving up, and no way we will stop living. 

Since day 1, Mom has told all of us that we will not wait to die, but instead continue to live. We still have normalcy in our lives, we still go out and enjoy life, we still argue, and we still make lots of mistakes along the way- but one thing continues, and that's our fight and determination to beat this! 

Dad continues to feel well, and it's been really amazing to see him out enjoying life! With another MRI in less than a week, the anxiety and fear are all coming back, as we continue to hope and pray the treatments are working- we continue to hope and pray for a good MRI result. 

Continue praying, as we continue fighting to BTHO Brain Cancer!

*Side note: Asking for a few extra prayers for a young man who was recently diagnosed with brain cancer. As hard as it's been watching Dad fight brain cancer, my heart breaks even more to hear of a child being diagnosed with this terrible disease. Send extra prayers for the parents and even more to that young man- as we all know how powerful prayer really can be!

Monday, September 8, 2014

Team: BTHO Brain Cancer's First Trip to Brain Power 5k

Success.

That is the one word I would use to describe this weekend's run in Cedar Park, Texas. To say I encourage each of you to attend the 'Brain Power 5k' and/or the 'Run For The Rose' next year would be an understatement, I think each of you absolutely NEED to attend! 

(Side Note: Run For The Rose will be Sunday, April 12, 2015!)

These runs put everything into perspective. As the survivors walked by before the run, a friend of mine looked at me and said, "Some of them are so young." And she's right. Brain Cancer does not discriminate. Brain Cancer does not just impact the old. Brain Cancer impacts us all. 

As I started in on my 5k, I looked at a little kid right in front of me and I read the back of his shirt: "In Memory of My Daddy." My heart sank. 

I was watching a 7 year old little boy run for his Daddy, his Daddy who was no longer here. I immediately realized that I could be running in memory of my Dad, but instead I was running in honor of him. And what an honor that was!

I also saw some familiar faces from the Dr. Marnie Rose Foundation, a foundation that has gone above and beyond for my family, and for all those in the cancer community. We talked about my Dad, we talked about our frustration with Brain Cancer funding and shared a hug- a hug with someone who knows EXACTLY what my family is going through. This upcoming 'Run For The Rose' will be the 13th annual run for the Dr. Marnie Rose Foundation, and in the last 12 runs, the foundation has raised over $4 million dollars towards Brain Cancer research. I talked with Dr. Marnie Rose's mother, who created the foundation, and Dr. Marnie Rose's dear friend, Sallye, who is the Executive Director of the foundation. We talked about how far the treatment options have come for brain cancer, and we also talked about how much more still needs to be done to catch up to other types of cancer treatments. These ladies are true inspirations to me. They were able to take something as terrible as brain cancer, and turn it into a foundation which is impacting so many on a daily basis. And for that, I thank them from the bottom of my heart.

I was so happy that my friend was able to see the face of brain cancer in so many types of people, a little child, a young mother/father, and a grandparent- she was able to see that brain cancer impacts so many and the impact can be so devastating. She was also able to see how the brain cancer community comes to together in such a wonderful way, she was able to see that strangers can become great friends because of brain cancer, and she was able to see that something so "small" as a 5k can make such a BIG impact. 

Our fight continues. Our fight will never stop to beat brain cancer, and my fight will never stop in helping to find a cure, so that no family has to fight like my family fights each day. It's not easy, some days are difficult, frustrating and discouraging, but this last week has been one of the best weeks Dad has had since October 5, 2013. For the first time, Dad wanted to go out to his shop and refinish some furniture he started on prior to his diagnosis, and for the first time things seemed even more normal than before. As I told Mrs. Rose at the Brain Power 5k, if this is as good as it gets, if Dad's speech, strength, and attitude is as good as it gets- I'm more than ok with it all.

Another round of chemo starts soon, and we continue to pray for the chemo to continue working and for Dad to continue to feel well! 

Keep praying, and we will keep fighting to BTHO Brain Cancer!

Friday, September 5, 2014

A Story I Felt That Should Be Shared...Brain Power 5k THIS Weekend!

As I prepare for another 5k this coming weekend, I also prepare mentally and emotionally for what the 5k represents- Brain Cancer Awareness. I know I will be surrounded by others fighting against brain cancer, and I know I will be asked for our story, what brought me to the run. I'm sure I'll share hugs with a stranger, who knows all too well our fight, and tears with others, as we share the devastation that is brain cancer. But I'm also sure these hugs will involve smiles, new friends and a community of people fighting for one common fight: A Cure. 

Before Dad was diagnosed, I had no idea what a Brain Cancer diagnosis really meant, nor could I have imagined what a Glioblastoma (GBM) diagnosis meant either- and maybe that's a good thing. Our story has been one filled with hope, faith and love- and we continue to fight every single day to beat cancer. You really don't realize how blessed you are until you hear of others going through something more difficult, and as I read the story below I couldn't help but thank God for these last 11 months with Dad. The story below is sad, that I will not deny, and I read it all with tears streaming down my face, as I know that story could have easily been about my own Dad. But the story doesn't end with sadness or loss of hope, no, the story ends with a change of perspective and a new found view on the world. The writer ended her story by saying: "My life is not how I imagined it would be right now, but it is beautiful, I cherish it and I will do my best to make it a worthy one. My dad would have it no other way." 

What a beautiful way to live. 

I encourage you all to read the story below and remind yourself how precious life really is, how little moments become big moments and how blessed we all really are in this world. I also encourage you all to send lots of thoughts and prayers on Sunday, as I meet with other families fighting brain cancer, and as I run for those who fight harder than I could ever imagine each and every day. As always, keep praying, as we keep fighting to BTHO Brain Cancer!

#RunningForLar #RunningForReagan

Erin Boyle Dempsey Writes on her family's experience with Brain Cancer

August 17, 2014
By Erin B. Dempsey

Cancer is never a word anyone wants to hear. Especially when that word is affecting someone that you love with all of your heart. When you hear the word cancer and then you hear it is in your loved one’s brain, such news can nearly knock you to the floor. I know this because my dad was diagnosed with glioblastoma on Labor Day of last year, and had I not been sitting in a car with my sister upon hearing the news I would have fallen to the floor. I know I could barely breathe, barely move. I was crying and my sister was crying and we could barely get ourselves to the right building to see my dad and just hug him. After hearing the words “brain cancer” our world fell apart as we knew it and because of those two words my family and I will never be the same.

My dad, James Philip Boyle, was a healthy, active, amazing sixty-five year old when he was diagnosed with glioblastoma. Sixty-five years old. To me, my dad was my hero. A living angel. My best friend. He was the life of the party and the most intellectual man I have ever known. My dad was the love of my mom’s life as he was hers; he was the apple of his grandchildren’s eye; he was a newsman. I spoke with my dad nearly every day and he was always, always a voice of reason amongst the chaos. Brain cancer took all of that away from me and from my family in less than twenty-four hours.

At the time of my dad’s diagnosis, I am being honest when I say that I am not sure I even really knew what a “brain cancer” diagnosis meant. I knew that my dad’s situation was dire. I had read enough that day to know that he (and all of us) were in for the fight of our lives. And I knew that we had very little time to prepare before we needed to take action.

Having to make life and death decisions when you are in complete despair is a terrible position to be in. I would never wish that on anyone. My dad, being my dad, made the decision to immediately press forward. It was his body, his life, his decision. We completely honored it even though it was the beginning of a series of the worst nights of our lives. Following the biopsy, when we had just found out that my dad’s tumor was the worst of the worst, he suffered a terrible stroke that left him unable to breathe on his own for nearly ten days. My dad lost his ability to speak, to move the right side of his body, to walk, to live the life that he loved, in minutes.

To see someone you love in ICU, not being able to breathe on their own and possibly even dying, when just hours before you were celebrating a holiday with him, laughing with him and watching football with him, is something that I am not sure I have ever wrapped my head around. I have come to the conclusion that I may never truly understand it and maybe I am not meant to. I certainly hope that nobody else has to feel this way though. It is one of my greatest wishes and something that I will be working for in my lifetime.

When I think about the suffering my dad experienced after the biopsy, one of the things that comforts me is that he was 100% ready to fight with whatever he had and he was ready to do it at that moment. He went into that surgery room as brave as anyone could ever be and he was brilliant. I am thankful we had that night together before the surgery and I thank God every day for the six months he was able to stay with us after the surgery.

I am different now. We are all different now. Losing my dad to brain cancer has moved me in directions I never thought possible. I am always thinking about how lucky we were to have that extra time with him. To shower him with love and to make sure from the depths of our soul that he knew just how much we loved him and how he had impacted our lives. Not everyone gets that time before losing a loved one, and I am keenly aware of that fact.


I miss my dad every second. There are times when I feel like the wind has been knocked out of me because I realize that I will never see him again. And then I think to myself how many others must feel this way too, and that being in this club is not one that anyone should ever have to be in. Every time I would have to say goodbye to my dad, I would give him the biggest bear hug and say: “Dad, I am giving you all of my energy. Take all of it.” And I know that he heard me and understood me when I said it. Now I am going to give all of my energy to my family, to my friends and to help in the fight against brain cancer. My life is not how I imagined it would be right now, but it is beautiful, I cherish it and I will do my best to make it a worthy one. My dad would have it no other way. 

Tuesday, September 2, 2014

Dad Update: Almost 11 Months Post-Diagnosis

It is absolutely crazy to think that we are 11 months post-diagnosis. 11 months! What a true gift these 11 months have been for myself, and my family. We've grown closer, found a new and improved faith in our God, and have been able to shine a light on the fight against brain cancer. 

If you google Glioblastoma Multiforme you see the statistics, the average life expectancy of someone diagnosed, and you cringe. I don't want to share these statistics to make anyone feel sorry for my family fighting against this disease, but I want to share these statistics so you see how far we've come and how BLESSED we've been through it all.
-Without treatment, the average life expectancy is 4.5 months.
-With treatment, the average life expectancy is 15 months. 

We've had 11 amazing months with Dad, as he has never lost his ability to know ANY of us, his sense of humor, his strength or his determination. Brain cancer is extremely underfunded and under recognized in the cancer community, which is why I think many people do not know what to expect when they talk to Dad or ask me how Dad is doing. I first want to share that it puts a huge smile on my face when someone asks about Dad, so please continue to ask, continue to pray and continue to think of him daily! 

Let me share what cancer has done to Dad:
-Cancer has taken away some of Dad's vocabulary. This is EXTREMELY frustrating to Dad, as he knows what word he wants to say, but his ability to say that word is difficult for him (at times). 

-Cancer has taken away some of his strength. I'm not sure if it's the cancer or the treatment, but Dad gets tired much more easily now, although each day I see him regaining his strength more and more. 

-Cancer has taken away his ability to work. Work was such a huge part of Dad's life and his identity, and each day we are working towards understanding and accepting our "new normal."

So sure, cancer has done some things that I don't appreciate, I don't care for, and to be honest, I hate. But let me share what cancer has not done to Dad:
-Cancer has not taken away his faith. In fact, cancer has given him even more strength in his faith and his ability to trust in a much higher power. 

-Cancer has not taken away his ability to recognize his girls. He knows my name, my mom's name, and my sister's names. He has always been able to recognize us, and for that I am so incredibly grateful. 

-Cancer has not taken away his hair. You would think a man wouldn't be too concerned about his hair, although Dad was so happy that his hair remained after his radiation treatment.

-Cancer has not taken away his sense of humor. 

-Cancer has not brought our family down. I quote Dana Hurst, another cancer-caregiver, all the time, and her quote is just perfect: "My fight. To not let suffering win! To not let it take away the joy in my faith. To not let it affect the relationships in my life. To instead, take it for its own run and use it to make me better. To allow it to show me when I am weak. To embrace those weaknesses when they are near and become stronger for it."

Dad continues with his treatment, with another MRI coming in our future right after the Washington County Fair- which was always something Dad took such great pride in being part of. But we continue to take it all one day at a time, one treatment at a time, and one MRI at a time. We continue to pray the MRI shows no additional growth, and we continue to pray that Dad's time with us is filled with faith, love and strength. 

Continue to pray, as we continue our fight to BTHO Brain Cancer!