The Story Behind The Status... Dad Update 7/12/2016

Today my Facebook status stated: "What an absolute joyful day! 33 months later and Dad's MRI looked good- no changes, no growth, all is good! We are so incredibly blessed- God is so so good."

But there is a much bigger story behind that post- because what they post doesn't accurately show is the amount of relief that filled by body when we heard the MRI results, because just hours before I was certain the cancer was back. 

Mom messaged me to let me know that she grabbed Dad's walker (something he hasn't used since his brain surgery) because Dad's legs were weak- very weak. My heart sank. I immediately called to figure out what was going on, what was causing this weakness- and I could hear the fear and concern in Mom's voice. It was in that moment that I just knew the cancer was back, that the tumor was impacting his strength and movement. And tears filled my eyes. 

I started frantically searching online, trying to figure out the doctor in Austin- when we could see him and what meetings I could move around this week to make sure we could get an appointment. My thoughts were frantic- and I received this text "Just remember, God already knows what this MRI will show and he is in control no matter what." 

Some relief filled my body- but I will admit, pure fear seemed to trump any other emotions. So we waited, and we waited- and finally we got the results...

A good MRI. No changes. No growth. All was good. 

My heart sank- but in a good way! I immediately felt this weight leave my body- and there I was filled with relief, thankfulness and grace. 

We shared with Dad's doctor this little episode and she didn't seem too concerned- we were all put at ease.

We then talked about the genetic testing performed on Dad's tumor, and that the first round of test were inconclusive, so a second round was being performed- more waiting. Once these results are back, we (as a family) will make the decision if we will take a break from the chemotherapy- something I struggle with making a decision on. 

But the good news is, this is a discussion that is happening for Dad! This is something 33 months ago I never imaged we would get to discuss, and for that I am so incredibly thankful- even though I dread making a decision on something that seems so very important. 

So we wait, and Dad continues his chemotherapy treatment this week, along with his IV Avastin treatment and then we make a decision in a month. We have one month to discuss, pray and really think through this decision- ultimately focusing on quality of life for Dad throughout it all. 

On another extremely happy note, we welcomed another member to our family on the 4th of July, Miss Hallie Rae Lechler:

We are all very much in love with this little girl and so very thankful that Dad was able to be with us as we welcomed her to our family. 

Thank you all for the continued thoughts and prayers, and thank you all as we continue to fight to BTHO Brain Cancer!

My Father's Day Letter. 6/17/2016

With Father's Day approaching this weekend, I thought I would take this moment to share a little letter to my Dad and to all those Dads out there, specifically those lucky enough to have daughters. It takes a pretty special soul to handle a house filled with women, and I'm lucky enough to have witnessed first hand my special soul that I call Dad. 

Dad,

Living with a house filled with women I'm sure was a bit challenging, but you handled all of those years with pure grace- and a few beers. You were patient and kind, helpful and handy, and most importantly loving. You have gone above and beyond to take care of your girls, and I think it's pretty clear that God hand picked you to be my Dad. 

Thank you for all the times you had to explain to me how to put air in my tires when the tire pressure light came on, even though we both know that to this day, I still don't know how to put air in my tires. Thank you for all the times I called and said that I "may or may not have hit something with my car", where you didn't respond with anger, just a simple, "well, you either did or you didn't."- and let's be honest, I always did. 

Thank you for teaching me that there are in fact two different types of screwdrivers, even though at the age of 28, I still manage to use the wrong one. Thank you for moving me five times in college and then again three times in Austin- because I simply never "loved" where I was living. 

Thank you for making me show animals in the fair, as the memories made in the chicken barn will forever be some of the best memories of my life. And thank you for making me clean up the chicken pen during the week, as now I have some pretty great stories to tell to my city friends.

Thank you for making me drive a 1997 Grand Am (non-working AC and broken windows)car in high school- as I learned to appreciate things a bit more. And thank you for giving in on your rule of "no new car until you're 18", because we both know summer in Texas can be a bit miserable without AC in your car. 

And thank you for these last 32 months of being able to be a caretaker and witness first hand your strength, determination and fight to beat cancer. You never complain, you never stop fighting, and you never stop loving each of us girls. You are my hero, and someone I look up to in so many ways. 

Throughout the years our relationship has been far from perfect, as a teenager I thought I knew it all- but it seems as though the older I get, the smarter you get as well. You've taught me so much in my 28 years, and I pray each day for many more years to come. 

So on this Father's Day, know that you have been one of the best fathers, friends, and supporters to not only me, but to our family. It takes a special soul to be a father to a house filled with women, and I think it's safe to say, a truly special soul you are. 

Happy Fathers Day!

Whitney

MGMT Methylation Promotor. Say What? 6/15/2016

Almost any article you read regarding Glioblastoma talks about "MGMT promoter methylation". Which apparently, if you're going to have Glioblastoma, that's the type of promoter you want to have. I guess it's like having the best of the worst? 

Yesterday we met with Dr. Fleener to schedule our next MRI and discuss any issues from the treatment. And then, we had a little discussion on this MGMT promoter methylation thing. Apparently, Dad's tumor was never tested for this initially- and there are a lot of reasons behind that- but now, there have been some new studies specifically about this MGMT promoter methylation. 

"The study demonstrated MGMT promoter methylation is a favorable prognostic factor in patients with glioblastoma."

IF someone has the MGMT promoter, then studies have shown that the tumor responds very well to the chemotherapy and treatment (i.e. the chemotherapy kills the cancer cells)- which is a VERY good thing. An even more recent study has looked at how long someone with the MGMT promoter should stay on chemotherapy after surgery and after the cancer is considered to be in remission.

So now, we wait for about 10 days to find out what type of promoter Dad's tumor may have, as this could impact the future treatments for Dad. 

We are so hopeful that Dad does in fact have the MGMT promoter, and his next MRI will look good- which could mean a little break from the chemotherapy- which is something Dad has so badly been wanting. 

It's honestly pretty crazy to think that we have been going to the cancer clinic for over 32 months now. Although, visiting the Cancer Clinic still manages to leave me filled with anxiety and stress- I think it's just the fact that I'm returning to a place where I never imaged we would be. 

And as the stress and anxiety filled my body yesterday- even though this appointment did not include any MRI results- I found a blog post that I couldn't help but want to share. This post took that stress and anxiety from my body. 

The title of the blog read "When God's Plan Doesn't Seem Wonderful", and I'm pretty sure I laughed out loud after reading that- because throughout these last 32 months, there have been times where this plan has felt anything but wonderful. 

The blog reads: "But what happens when you look around and His plan looks nothing like you ever imaged? What happens when it's darker and scarier and more painful than you ever thought He'd allow? What happens when you cry out for Him to take a burden away and He doesn't. What happens then?"

I think this blogger read my mind, as I went back to those first few weeks after Dad's diagnosis- where I questioned it all, I questioned why God had done something so terrible to my Dad, and I questioned why so much pain was being thrown our way.

But then the blog continues, to read (which is so very close to my own experience in Dad's cancer diagnosis): "Perhaps it's in that darkness that one can easily see the dysfunction of a theology centered around God only offering good things. It's in that darkness that you're reminded of your dependence on Him and your inability to do anything to control the current situation. And perhaps that's exactly where your faith learns the character of the true God."

It was in that darkness that I leaned on my faith to make it through some of our more difficult days- from nights in ICU, to days spent at the Cancer Clinic, and nights sleeping on the couch to be close to Dad- it was clear that I had no ability to control the situation. And as difficult of a lesson that has been learning (and I'm still learning!)- I think it's exactly where my faith has learned the character of the true God. 

Dad started another round of chemotherapy on Monday, along with another round of Avastin- and although these weeks are always difficult for him, I have such faith that his strength is much greater than the side effects of the medicine. We continue to pray that if it is God's will, the treatments will continue to work and Dad will continue to spend quality time with each of us. 

The blog ends with words that I think I need to repeat on a daily basis- as some days are much better than others in the Glenz household-

"And so in remembering that the God of the Bible did not spare even His own Son from suffering and pain, be encouraged to know that all of this pain, your pain, is not in vain. And while our own wonderful plan for our lives might not come to fruition, we can rest assured that no matter the heartache and trials, His wonderful plan for our life is always coming true."

Thank you all for the continued thoughts and prayers, and thank you all for helping us BTHO Brain Cancer. 

Blog Post Referenced Above: http://www.lindsayfranks.com/2016/05/18/wonderfulplan/

Post MRI Results. Dad Update 5/26/2016

So, our world has been a bit busy lately- so I apologize as I failed to share some WONDERFUL news with everyone. 

During Dad's last appointment, Dr. Fleener discussed following up with other radiologists to determine what they thought this small "enhancement" could be- since it had not changed since our last MRI.

And Tuesday Mom received a call from Dr. Fleener with information on their conclusion:

They concluded that there is no cancer growth going on. 

Oh how thrilled we are to hear that news!

Dad just finished another round of chemotherapy, and will continue with another round of Avastin in a week. We will discuss another MRI at our next appointment with Dr. Fleener, but until then, we are taking it all just one day at a time. 

I can't say enough wonderful things about Dr. Fleener, the staff, and nurses at the Cancer Clinic in Bryan. We have such an amazing relationship with each of them, and having Dr. Fleener personally call Mom helped to reiterate just that. 

Not to mention, the relationship I've made with the ladies in the business office- they have been absolute lifesavers as I've tried to understand the world of insurance. I received a call from one of the ladies to let me know that two claims I've been fighting were now approved and processed- let's just say, I've been more than happy to receive calls from the Cancer Clinic this week.

So if there is one thing I've learned throughout Dad's cancer battle- it's to never give up (and I've learned this in more than one way!)

Dad's pure fight and determination is so obvious in his day to day life- as just the other day he wanted to mow the grass, something he just hasn't felt like doing for so long! He continues to prove the statistics wrong, he continues to fight through the pain of his treatments and he continues to never give up. 

And I've learned to never give up when it comes to fighting insurance companies and hospitals. As just yesterday I was on the phone with one hospital and two separate insurance companies. 

It's amazing how quickly you get what you want when the insurance company realizes that the paperwork completed by your dad, which gave the insurance company the ability to speak with you legally, expired 9 months ago and they've talked to you numerous times since then. You just throw out "HIPAA violation", and that pretty much takes care of any issues.

I've fought two hospitals and three different insurance companies- and they all work the same- they push you away until they think you will give up. Unfortunately for them, I've learned from the best on never giving up, and I plan to continue fighting for my parents throughout this process. I never want Dad's fight to be a huge financial burden for my parents, and if it means fighting for each dollar they are billed, that's exactly what I will continue to do. 

We are so incredibly proud of Dad, and we are so incredibly proud of our friends and family. Each person has stepped up in one way or another- we've been overwhelmed with love and support, thoughts and prayers, and the continuous push to make it through some of our more difficult days. There is no way we could have survived these last (almost 32 months!) without our friends and family. 

We continue on this fight, as Dad has beat all of the statistics we were given that grim day at our Neurosurgeon's office- with treatment less than 2 years, without treatment less than a year. He continues to BEAT this disease just one day at a time- he continues to inspire me each day. 

Some days are good, some days are difficult, but each day with Dad present and able to join us in just the little things makes each day great. We all struggle with Dad's post-cancer life- and I think Dad struggles the most- but we continue to remind him how STRONG he is, how FAITHFUL he continues to be, and how PROUD we are each day of his fight. 

Thank you all for the continued thoughts and prayers- as we've seen the power of prayer work wonders in our lives- and thank you all for helping us BTHO Brain Cancer! 

What I Learned From Knee Surgery...& Dad Update 5/20/2016

Wednesday morning I had knee surgery. A surgery I've been putting off for about a month now. And honestly all day Wednesday, and most of yesterday, I sat looking at my knee, then looking at my crutches, wondering- why does this hurt if the laparoscopic incisions are so very small and why does this hurt more than BEFORE surgery? 

Needless to say, it's day three and it feels much better already. 

But I learned something- something that I thought I already knew, but now have an even greater appreciation for- my Mom is an absolute rock star. 

You don't realize how much help you will truly need when you are faced with walking only with crutches- for example, how do I fill up a cup of water from the kitchen and bring it to the living room? Mom. 

Or, how do I make dinner and sit down at the table to eat? Mom.

The examples go on and on. 

I can't even begin to describe what an incredible caregiver she has been to Dad throughout his battle- she's compassionate, caring, and patient. She gives her love and her time without ever asking for anything in return. And she goes above and beyond to make life comfortable. 

She's a rock star. 

And Dad. Well, Dad is not far behind on this "rock star" status, as he's been home with me since Wednesday. He fills up water cups for me while Mom is at work, helps me make my plate for lunch, and checks on me constantly throughout the day.

They are both such a great team- they balance each other and bring out the absolute best in one another. 

And Mom does this all while working full time. And Dad does this all while on chemotherapy this week. 

Rock Stars.

Dad's chemotherapy seems to be a LITTLE bit better this week- and we aren't sure if it's due to the good MRI we received this week, Dad B-12 shots we started on, or the fact that he is so very distracted with my recovery- but regardless, it's been a good week for Dad. We are so very thankful!

It was wonderful to be able to go into surgery knowing that Dad's MRI was in fact stable, that it showed no changes and we could keep going on our current treatment course- talk about a decrease in stress and anxiety for me! 

31.5 months post diagnosis is so very rare- as those who make it 3 years with Glioblastoma are considered "long term" survivors. We do not take these 31.5 months with Dad lightly- we take these months and praise God for the time we've been given- the QUALITY time we've been given. And we take these 31.5 months and think back to the countless friends and family who have encouraged us, prayed for us, and supported us throughout it all. 

From phone calls, text messages, meals, snacks (LOTS of snacks!), and flowers being send my way- I can honestly say that I have the best friends and family anyone could ask for. 

Maybe it takes something like a little knee surgery to really see first hand the type of caregiver Mom is to Dad, but I'm so glad that I get to see first hand what Dad sees in Mom- a compassionate, caring and absolute wonderful person who does so much for others, and expects very little in return. 

Asking for continued prayers as Dad continues to fight through this week with determination and faith. Thank you all for supporting us on this journey, and thank you for helping us BTHO Brain Cancer!

Loud and Clear. Part II. Dad Update 5/17/2016

In my last post I talked about how God has been speaking to me loud and clear recently, and when I pulled out my devotional this morning, I could help but just laugh. Yes God, I get it- you're coming in loud and clear.

I would be lying if I said that MRI days get easier, that we are in a routine when it comes to receiving these results- but that is far from the truth. Each time is more and more stressful, as we are now 31.5 months post diagnosis. 

We were given 14 months after Dad's tumor was found. We've more than surpassed what was expected- and that has a lot to do with the power of prayer! And our attitude of HOPE, instead of hopelessness, has had a lot to do with all of these "loud and clear" moments...like the one this morning. 

"As you sit quietly in My presence, remember that I am a God of abundance. I will never run out of resources; My capacity to bless you is unlimited...living by faith, not by sight."

By all scientific statistics, Dad's tumor should have returned, and it should have returned with vengeance. Aggressive is a good way to describe Dad's cancer- and when you google Glioblastoma, you'll commonly see "most aggressive cancer that begins in the brain..." 

By all scientific statistics, Dad should have been faced with the tumor returning...but sometimes there are things that science just can't explain- and in those moments it would be foolish to not believe in a much higher power controlling each and every step. 

Dad's MRI today showed no changes from the last MRI- which means, no tumor growth! We are thrilled! The MRI still shows the small enhancement, although if this was TRUE tumor growth, the MRI would have shown a mass, as Dad's type of tumor can double in size every 2 weeks. The MRI did not show a mass, just that small area of enhancement. 

Dr. Fleener is not sure what exactly that small area of enhancement could be- possibly some blood flow to the area where the tumor was removed- we are unsure. But what we do know, is that it is currently not a mass of any type, and that is what we are taking from this MRI.

We would be unrealistic if we didn't constantly think about the "what if" and the future of Dad's cancer treatment, as this is a type of tumor that is known for the question "When will the tumor return?" Because, statistically, almost 100% of these return. 

But we would be unrealistic if we didn't send our praises, thanksgiving and pure joy to friends and family during this time- as you've all once again proven the true power of prayer. We asked for prayers- heck I feel like I've been begging for them!- and you've each poured prayers our way since day 1. And for that, we will forever be so thankful. 

Dad received another round of Avastin today, and started another round of chemotherapy last night. These weeks are tough, but I know Dad is tougher. 

With all the news and buzz surrounding Glioblastoma and the new treatment option out of Duke University receiving such BIG news- we can't help but be so thankful for the HOPE treatments and news coverage about Dad's disease continue to give families like ours and patients like Dad. 

This morning when I got up, and surrounding me were thoughts of concern, confusion, and doubt in this journey, I repeated the words of my aunt- "We will deal with whatever it is." Pretty simple advice, but so incredibly true. 

We can't plan the cards we are dealt, we can't determine what will or will not happen in our day to day activities, but what we can do is sit quietly in His presence, remembering that he is a God of abundance, and never will He run out of resources. 

This weekend we helped celebrate my cousin's wedding. We each take these moments of celebration that Dad attends as the little things in life that mean so incredibly much. We have been so blessed these last 31.5 months, and we continue to pray that it is God's plan for many more months to come. 

Thank you all for the continued thoughts and prayers, and thank you for helping us BTHO Brain Cancer!

Loud and Clear. Dad Update 5/13/2016

Some days I want to just yell, "Yes God I get it, I'm hearing you LOUD and CLEAR." And this week, I've experienced that moment more than once.

On Tuesday, I opened my devotional to read- "Thank Me for your problems." Apparently, God was doing a little foreshadowing, because the day ahead was one filled with many problems, and unfortunately, some tears. 

I received a call Tuesday from Dad's doctor's office stating that Humana did not want to approve the MRI next week because it was too close to the last MRI, and instead schedule it in June. I'm not exactly sure at what point insurance companies became more knowledgeable than an Oncologist, but apparently that is the world we are living in. Many times involving the patient in these issues can make the approval process go much faster, and must smoother- and since I've experienced one, two, maybe 50 phone calls with insurance companies, Dad's doctor knows that I am more than willing to help with the process.

Let's just say, 30 minutes later, a customer service representative from Humana yelling at me "hold on, hold on, hold on...", the MRI was approved. 

"Thank Me for your problems."
"Thank Me for your problems."

I repeated that sentence over and over again on Tuesday, as the day continued with more phone calls with insurance companies (along with writing one formal complaint and one appeal), and then a lot of adult like things that I had to take care of for myself- new tires, payment for knee surgery...

Let's just say, after the second call with insurance, and as tears streamed down my face with pure frustration at the entire insurance process, all I could think about was "Thank Me for your problems."

God, I'm really trying. 

And as a couple of days have passed since that awful Tuesday, I opened my devotional today to read: "Be on the lookout for what I am doing in your life. Worship Me by living close to Me, thanking Me in all circumstances."

I hear you loud and clear. 

I would be lying if I said I wasn't thinking ahead to Dad's next MRI, wondering what it will show and thinking of our next steps, if in fact the cancer has returned- add on the stress of insurance companies and I'm sure my blood pressure is at some extreme level. 

Not to mention, my outlet throughout Dad's diagnosis has been running- as I've joked many times that it has "saved" me these last 2 years, and a few weeks ago I found out that I have significantly torn my meniscus while training for a half marathon. I was sad, disappointed, and (for lack of a better word) just bummed. But I'm trying to remember, "Thank Me for your problems."

I'll be having knee surgery next week, following Dad's MRI results, and I struggle with if that is the right time for the surgery- because IF the MRI is not good, will we need to see a new doctor right away? Will Dad start a new treatment following the MRI? What if...? What if...? What if...?

Honestly, it all drives me crazy. 

"Thank Me for your problems."

And with my mind going in all directions, concerned about it all, I remind myself of one of my favorite devotionals, and make myself read it over and over again this morning.

"Follow Me one step at a time. That is all I require of you...You see huge mountains looming, and you start wondering how you're going to scale those heights...But you don't know what will happen today, much less tomorrow...If I do lead you up the cliffs, I will equip you thoroughly for that strenuous climb...Walk by faith, not my sight..."

Y'all, I'm really trying to follow that and be reminded to be THANKFUL for my problems. It is helpful that Dad has been feeling better- still tired and worn out, but no new headaches, or increase in blood pressure. Just seeing him up and going more has been such a blessing, and I can't help but think that it's due to so many thinking and praying for him during this journey. We are so HOPEFUL that he is going to BEAT this. 

There was also some exciting news out of the brain cancer community yesterday:
http://www.cbsnews.com/videos/bold-cancer-treatment-granted-breakthrough-status/

Last year, CBS featured a story on the polio virus being used to beat Glioblastoma- and now, the FDA has declared this treatment "breakthrough" status and is in the process of fast-tracking the treatment. This gives us even more HOPE. 

As the day of Dad's MRI quickly approaches, we are asking more than ever for prayers that the treatments are working for Dad and the MRI appears stable. We are asking for calmness and peace for us during the waiting time, and prayers that IF the tumor has returned, we are able to make the best decision possible for our family.

Thank you all for your continued prayers during this difficult time for us- as we continue fighting to BTHO Brain Cancer!