Dr. Marnie Rose Event. 2/24/2016

Ok, very rarely do I post so often, but last night Mom and I attended an event hosted by the Dr. Marnie Rose Foundation, and I felt as though I wanted to share all the amazing things the foundation is doing for so many!

After Dad's MRI in October appeared to show "enhancement" (indicating tumor growth), I quickly started looking at other options. One of those being Optune (http://www.optune.com/). It's a device worn on the head of the patient, which has shown such positive impact on survival and quality of life for patients with recurrent glioblastoma (and recently newly diagnosed glioblastoma patients). I found a doctor at Scott & White in Temple that has many patients on this device, I've researched him (Harvard Medical School isn't too bad), and I knew that's the guy I wanted to see next- IF Dad had another bad MRI. 

And would you guess- he was there last night! I immediately recognized him and knew I had to talk to him about Dad's case and have some sort of personal connection with him- because IF the time comes and we need him, I'm going to need him to remember us! 

We discussed the treatment, and the NEW treatment options Scott & White in Temple has to offer glioblastoma patients- just talking to him was so incredibly encouraging. 

We also discussed insurance- you know me, I need to know how we would be able to cover the cost of the device IF insurance denies the device. After doing a bit of research, the device is about $20,000 per MONTH. And...I realized currently Dad's insurance considers this "experimental", although it is FDA approved, and when Dad moves to Medicare, it is covered on a "case by case basis". 

So, since October I've been stressing about us being able to afford this type of treatment, but last night as I spoke with the doctor from Scott & White, he assured me that the company that makes Optune wants as MANY patients as possible utilizing the device, so they work EXTRA hard to get coverage from insurance companies. He assured me that the cost of the device was not something I should worry about. I was overjoyed to hear that!

Mom and I enjoyed wine, food, dessert and a discussion on the advances in pediatric brain tumors. The Dr. Marnie Rose Foundation is doing so much in the brain cancer community! To hear all the funding they provide for pediatric research, and to see so many doctors at the event that are provided funding by the Rose Foundation for clinical trials and research- you can't help but feel so encouraged!

Meghan was able to stay with Dad and make dinner, while Mom and I attended the event. Dad's on chemo this week and he was not feeling the best yesterday- but he always enjoys when one of his girls is at the house, so I know last night was a good night for him. 

We struggle with the side effects of the treatment, but we are so incredibly thankful for the treatment options and how well they have worked for Dad. When we told one of the doctors last night that we were 28-months post diagnosis, with no recurrent tumor- he looked shocked. Someone has to be that small percentage of people who BEAT this, or at least BEAT the statistics- and right now, Dad is doing just that. 

We have 54 people joining us on April 10, 2016 for the annual 'Run For The Rose 5k', and we are so excited! We have also received over $1,400 in donations to the foundation to continue to provide funding for brain cancer research. It is truly amazing! If you are interested in joining us or making a donation to the foundation, please visit our team page (http://drmarnierosefoundation.racepartner.com/run-for-the-rose/bthobraincancer) or email me (glenzwhitney@gmail.com) if you would like more information. We are also ordering 'Team Lar' t-shirts again this year, if you are interested in purchasing one, please send me an email. 

Last night my oldest sister called and talked about a family that received the same diagnosis as Dad recently, she talked about how devastating this was to that family- and we could relate all too well. But we hope that others can see these last 28 months of Dad's fight as encouragement and HOPE for a cure- and HOPE for beating the odds (regardless of the type of cancer). We hope that others can see that instead of being angry and upset about this path so perfectly created for us, we have instead embraced it and fought to defy the odds placed against us. 

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

A Girl For The Glenz Family. Dad Update 2/23/2016

This week starts another round of chemotherapy and Avastin- oh how Dad hates these weeks, and I can't say I blame him too much. 

From the taste of the pills that Dad has to take, to the stomach issues he continues to have during the week, the extreme fatigue and, not to mention, another trip to College Station for his IV treatment- it's an exhausting week for Dad.

But, our family is all on a little bit of a high as we found out just this weekend that the second grandchild to be welcomed to the Glenz family will be a...

GIRL!

We are all so incredibly thrilled to welcome this sweet little girl into our family and love her unconditionally. I think Dad has the whole "raising a girl" thing down by now. 

We've been feeling so much love and support lately through Dad's cancer battle, as we now have 51 members on our team 'BTHO Brain Cancer- Lar's Fight' and we've raised almost $1,400! Our third trip to 'Run For The Rose' looks like it will be another successful one- thank you all!

If you would like to join our team or make a donation to support brain cancer research through the Dr. Marnie Rose Foundation, please visit our team page: 

http://drmarnierosefoundation.racepartner.com/run-for-the-rose/bthobraincancer

Our fight to beat brain cancer is far from over, as we continue to hope and pray that it is in God's great plan to keep the cancer from returning for days, months and years to come. We have so much to look forward to, as this sweet little girl enters our family this year. 

Asking for a few prayers for Dad during his difficult week- praying that he continues to feel well and is able to handle the treatments the best he can. Also asking for a few prayers to a dear former teacher of mine, faced with a difficult cancer diagnosis- although she's one of the toughest people I know, so I have no doubt that this cancer really doesn't stand a chance. And, another  friend of mine who received news on her mom's cancer journey- it wasn't the news that they were hoping to hear- but asking for prayers for guidance, comfort and understanding of this journey. 

As I told her today- cancer sucks. There is no better way to put that, but I also reminded her of one of my favorite devotionals after she shared the news on her mom's cancer diagnosis:

"...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...Keep your mind on the present journey, enjoying My Presence. Walk by faith, not my sight, trusting Me to open up the way before you."

I remind myself, and Dad, every day- when chances are one in a million, you fight to be that one. And that's exactly what we continue to do. 

Thank you all for the continued thoughts and prayers on this incredible journey, thanks for joining us each step of the way, and thank you all for helping us BTHO Brain Cancer!

Why I Run For The Rose.

As our 3rd trip to 'Run For The Rose' approaches, I wanted to share the reason why I'm so incredibly passionate about the 'Run For The Rose' 5k- which supports the Dr. Marnie Rose Foundation and brain cancer research in Houston. And it's pretty simple. Because I want to change something that brain cancer patients and families hear after a diagnosis. I want to change the prognosis. 

"For adults diagnosed with Glioblastoma, treated with temozolamide (chemotherapy) and radiation therapy, the median survival is 14.6 months, and two year survival is 30%."

I remember hearing those statistics as we learned what type of tumor Dad was fighting against, and I remember thinking 14.6 months just isn't long enough. 14.6 months was not enough time. 

And thankfully, through Dad's amazing strength, faith and fight- along with the countless number of people praying for us, and our amazing doctor who continues to provide the best possible care- we are 28 months post diagnosis. We've reached the two year survival mark. We are so incredibly lucky.

But we also know there are many that do not get to see the two year survival mark. And because of that, because of the devastation that can come with a brain cancer diagnosis, we fight to bring awareness and funding for a CURE. I pray that one day, no family will ever have hear "terminal cancer" at the initial point of diagnosis. I pray that one day, no family will be forced to search clinical trials for their loved one, just after the very few FDA approved treatments are showing to not be nearly as strong as the beast Glioblastoma. I pray that Dad will see the day of a cure, and know that his struggle and fight during this battle was worth it in raising awareness and funds for brain cancer research. This is why I Run For The Rose. This is why it means so much to me and my family.

We would love to flood the course with our Maroon- BTHO Brain Cancer t-shirts and help show our love and support to Dad, and the many other brain cancer patients and families. Please consider joining us on April 10, 2016 or consider making a donation to the foundation. 

http://drmarnierosefoundation.racepartner.com/run-for-the-rose/bthobraincancer

In a recent Facebook post I shared the following, and I think it very accurately helps describe my love and passion for the Dr. Marnie Rose Foundation:

I wish I had all the words to truly share how much the Dr. Marnie Rose Foundation means to my entire family. Through the initial diagnosis, they were our support system- as we relied on them to navigate through a brain cancer diagnosis, and then, as the treatments continued they became our source of information for upcoming treatment options (many of which they directly fund!), and then when Dad's MRI in November indicated potential growth, they were the ones I turned to for recommendations for doctors at MD Anderson and clinical trials. And the beauty of it all- our story of the Dr. Marnie Rose Foundation supporting us from day 1 is not unique, as this is exactly what the foundation does for so many other patients receiving the news of a brain cancer diagnosis. This is why the foundation and the 'Run For The Rose' is so important to our family, this is why I am constantly recruiting others to join us for the 'Run For The Rose' 5k in Houston, this is why we are able to stand so strong in Dad's fight- because we know we are part of the FIGHT for a cure. And I'm so very proud of that.

We are still managing through the Medicare information- as I've learned way more than I ever thought I would know about Part A, Part B, Part D, supplemental insurance, medicare advantage plans...the list goes on. When people tell me that they're sorry we have to deal with all the pains of insurance, I quickly remind them that we never thought we would be this far in Dad's diagnosis. We never imagined that we would have made it to when he was Medicare eligible- so this "problem", I will gladly take with open arms! Another round of chemotherapy starts on February 22, and we continue to pray for a good 5 days for Dad- as he battles through the side effects of the drugs. It's not easy, and I know it's a difficult week- but we continue to lift him up in prayers as he fights to win this battle.

Thank you all for the continued love and prayers being sent our way- and thanks for helping us BTHO Brain Cancer!

(Picture from last year's Run For The Rose)

Stable. Dad Update 2/10/2016

Today we went in for another MRI report, and once again, my mind was racing with trying to predict what the MRI would show. My mind was trying to prepare for every possible outcome and what next treatment option I wanted to ask about.

My mind was so focused on the 'what if', and my body was consumed with anxiety over these test results...and then we received the news...

Stable.

My body immediately felt like it was 10 lbs lighter- the weight of the anxiety and fear was gone- and all I wanted to do was celebrate, smile and take in the moment of pure joy that everyone was experiencing. 

We are 28 months post-diagnosis and the MRI days do not get easier. The chemo weeks have without a doubt not been any easier. And the Avastin treatments still feel like they take forever. But all of these things have been part of our cancer journey- just one small chapter in this amazing life- and it's all helped us put life in perspective and enjoy the truly little things in life. 

The little things. Like this sweet little boy, who stole all of our hearts the day he was born and continues to brighten even the darkest days.

To think that this sweet little nephew of mine will be a BIG brother soon, is a little unreal- but I absolutely love being an Aunt, so I welcome the next bundle of joy with open arms!

Dad had another round of Avastin treatment today, and we will schedule our next MRI in 2-3 months. Dr. Fleener is very pleased with how well he is doing, and we are thrilled that the MRI did not indicate any enhancement or growth. I would have never imaged that 28 months after that terrifying seizure and hearing the words "cancer" for the first time, that we would be where we are today- but here we are! Loving every minute of this life, loving every minute of Dad's journey, and reminding myself that each day is a true gift with Dad. 

As Lent begins, I struggled with figuring out what exactly I should give up this year- and the more I thought about it all, I decided a better idea would be to DO something during this time. As we prepare for the coming of Easter and have this time of self-examination and reflection, I thought of no better way than a Bible study. I found one from the same author of my daily devotional (Jesus Calling) and it had such a perfect title "Trusting in Christ".

Turning to just the first session I saw the following words:

"...Our awareness of these flaws in people and things can leave us feeling insecure, as if there is no one or no thing we can truly trust. The Bible claims God is different. He is perfectly trustworthy. This seems too good to be true, so we doubt it is true. Even when we want to trust what the Bible says about God, a lifetime of being let down by others leaves a core of mistrust inside us. We find it hard to believe God is all-powerful and can handle any situation that confronts us...."Strive to trust Me in more and more areas of your life. Anything that tends to make you anxious is a growth opportunity. Instead of running away from these challenges, embrace them, eager to gain all the blessings I have hidden in the difficulties. If you believe that I am sovereign over every aspect of your life, it is possible to trust Me in all situations. Don't waste energy regretting the way things are or thinking about what might have been. Start in the present moment- accepting things exactly as they are- and search for My way in the midst of those circumstances."

I can already tell this study is going to speak to me in so many ways. Thank you all for continuing on this crazy, emotional, and joy-filled journey with my family- our path is far from perfect, but how perfectly it was created for us to walk hand in hand. 

Continue the prayers as Dad fights daily to BTHO Brain Cancer- and we continue to thank each of you for the love and support you've shown to us over the last 28 months. 

Run For The Rose:

Our 3rd trip to 'Run For The Rose' (a 5k in Houston which supports brain cancer research through the Dr. Marnie Rose Foundation) is quickly approaching and I would love to have each of you join us on a day that means so much to my entire family. If you aren't able to join, but would still like to support us on that day, please consider making a donation to an organization that has gone above and beyond for my family, and continues to do the same for so many other families just like mine. 

http://drmarnierosefoundation.racepartner.com/run-for-the-rose/bthobraincancer

Medicare. Part A? Part B? Part D? Now I'm Officially Confused.

So here we are, as Dad's 18 months of COBRA come to an end, and his 2 year period on Social Security Disability approaches- which means Medicare coverage. 

Actually, it means pure confusion. 

COBRA can not be used with Medicare, as they are both federal programs. Ok, that I understand. 

So we drop COBRA and Dad is automatically enrolled in Medicare Part A & B come April 1st. Ok. That sounds fine. 

But apparently with Medicare, you need a supplemental insurance or a secondary insurance. 

And with Medicare there is a Part D- Prescription drug portion. 

So I've got Part A, Part B, Part D, Supplemental....and now my head hurts and I'm beyond confused. 

Dad's treatments are expensive. VERY Expensive.

When you're talking about $25,000 a month (without Insurance), which doesn't include blood work or doctor's appointments, or MRI's- you're talking expenses that just aren't feasible for anyone!

So financially, we are trying to figure out our best option- as us Glenz girls are searching every possible document on Medicare website for information. Have I mentioned that the government does a wonderful job of laying out everything for us?...Yeah. 

AND to make things even more confusing- Dad's chemotherapy is done via oral pills. Which we receive via prescription and they are administered at home. Which you would think would fall under Part D (Prescription Medicine).

Yeah, it's not. Apparently ALL chemotherapy drugs (oral and IV) are considered Part B. 

Ok. So we figured that out. NOW, can you tell me the percentage of payment? Maybe a medical policy document Medicare has, similar to other insurance companies?

I asked this question and the billing ladies at Dad's office just laughed. Sorry, I forgot we are talking about the government here. 

So our next plan is to sit down together, write down what we know, what we are confused on, and what questions we have, and then....I hate to even say it...schedule a meeting with Medicare to figure it all out. 

We are stressed. We are confused. Any and all help that ANYONE has with Medicare (via disability) and supplemental insurance will be GLADLY accepted by our family. At this point, we really need all the help we can get. 

But on a positive note, we have until April 1. We do not have to figure it all out tomorrow or the next day or even next month. We have a little bit of time to make some decisions. 

Here I am, trying to figure it all out- stressing over each and every thing I don't understand, and forgetting to be so thankful in what I do understand about this process and insurance. So thankful that these last 2 years threw me into a "sink or swim" course when it comes to insurance companies and disability. 

So as thankful as I am, at at the same time stressing about it all- I pull out my devotional and how perfect it was:

"Trust is a golden pathway to heaven. When you walk on this path, you live above your circumstances...The low road is circuitous: twisting and turning in agonizing knots. There the air hangs heavy- and dark, ominous clouds predominate. Relying on your own understanding will weigh you down. Trust in Me absolutely, and I will make your path straight."

Trying to take this all one step at a time, TRUSTING in this path (although at times a very confusing path), and reminding myself that it will all work out just fine. 

Still fighting hard to BTHO Brain Cancer- one insurance change at a time!

Dad Update: Dad is finishing up another round of chemotherapy and he had an Avastin treatment on Wednesday. Another MRI is scheduled in a couple of weeks and we continue to be so thankful for how well Dad continues to feel. Thank you all for the continued prayers!

"I know the plans I have for you, and they are good." Dad Update 1/20/2016

I have to admit, I've been terrible about updating Dad's blog when things seem to be stable - so I apologize. But the good news is, when I don't update often, there is a GOOD chance that it means things are going well. And right now, that couldn't be more accurate. 

After Dad's MRI in November, we were all thrown into this state of confusion, worry and sadness. We were concerned for the next treatment options, praying for Dad to feel better, and right back into the sadness that so many in the fight against cancer feel. We reached out for prayers. We asked anyone and everyone to pray for Dad. To pray for healing and comfort. 

And the power of prayer took over. I can't explain WHY Dad's last MRI appeared better than his one in November, but what I can explain to others is the number of people thinking, praying and lifting us up during this time. When medically something can't be explained, it's always pretty easy for me to find where the real source of healing came from- prayers and a pretty amazing Man watching out for us. 

So it seemed all too perfect today when I pulled out my devotional, which by the way looks as though it's been through a lot- pages are bent, the binding is coming apart, and the edges are worn- which is a pretty good way to describe the path we've been on these last 2 years. We've weathered the storm, but not without a few bruises and bumps along the way- but like they say "Maybe life isn't about avoiding the bruises. Maybe it's about collecting the scars to prove we showed up for it." And I think my scars would prove just that.

But as I pulled out my devotional, it was wonderful to read:

"Approach this day with awareness of who is Boss. As you make plans for the day, remember that it is I who orchestrates the events of your life. On days when things go smoothly, according to your plans, you may be unaware of My sovereign Presence. On days when your plans are thwarted, be on the lookout for Me! I may be doing something important in your life, something quite different from what you expected...Don't try to figure out what is happening. Simply trust Me and thank Me in advance for the good that will come out of it all. I know the plans I have for you, and they are good."

As Dad faces another round of chemotherapy and Avastin treatment next week, we continue to hope and pray that it is God's will for Dad to continue to BEAT this cancer. We continue to hope and pray that Dad is able to manage the treatment side effects and is able to have QUALITY of life throughout his fight. We continue to hope and pray that God grants us many more years of QUALITY time with Dad. 

It always astonishes me the number of people who ask me about Dad- many who have known Dad for years, some who have never met "Lar" but know all too well the many stories I've told of him over the years. It makes my heart so incredibly full to know that so many people are thinking and praying for him- we've beat the statistics placed in our hands that day in October 2013, and I continue to pray that we continue to beat these statistics for many more months to come. 

We are not sure what Dad's next MRI will look like, but after spending another holiday season with him, one that we weren't sure we would get to experience, I have to think that everything now is just icing on the cake. Such sweet, sweet time I get to spend with my Dad- and truly appreciate every minute, every birthday, every random Saturday, with the best Dad in the world- a man that I've been lucky enough to have loved my entire life. 

Asking for continued prayers during Dad's next round of treatment- as we pray he continues to feel well and continues to BEAT this disease. And prayers for a good MRI in February. 

Thank you all for your love and support, and thanks for helping us BTHO Brain Cancer!

*Run For The Rose is approaching in April, and we would love to have each of you join us on such a special day for our entire family! Please consider joining our team, or making a donation to the foundation which supports so many families just like mine. 
http://drmarnierosefoundation.racepartner.com/run-for-the-rose/bthobraincancer

If you have any questions about the event, please feel free to email me (glenzwhitney@gmail.com) and I would love to answer any questions you may have!

Run For The Rose 2016

We are just 3 short months away from our 3rd trip to the 'Run For The Rose'- a 5k in Houston supporting the Dr. Marnie Rose Foundation and brain cancer research.

In our last 2 trips we've helped raise over $16,000 and last year we had over 110 participants on team 'BTHO Brain Cancer- Lar's Fight'. 

The Dr. Marnie Rose Foundation helps to fund research in Houston for many brain cancer patients, just like my Dad. They provide funding for clinical trials, and they provide support to so many families like mine. I've leaned on them numerous times with questions and concerns during Dad's fight- and each time they've provided guidance, comfort and support. I can't say enough wonderful things about the organization. 

The 'Run For The Rose' really has something for everyone! Those of you who enjoy a little 5k, they have a nice course for you to run either timed or non-timed, and for those that want to enjoy a nice walk instead, you can walk the 5k or participate in the family 1k. 

After the run, there is an area for the kids to enjoy food, face painting, and bounce house, and also lots of food and drink vendors for everyone to walk around and enjoy (FREE!). 

The run will take place on April 10, 2016 at NRG Park in Houston. The race beings at 8:00 am with a Survivor Stroll, when the many brain cancer survivors walk as a way to begin the activities for the day. And then the races begin, with the 5k starting at 8:15 am and the 1k at 8:45 am. 

Maybe you're unsure exactly what this event involves? Check out the video from last year's run, you may even see a few members of our team featured in the film:

https://www.youtube.com/watch?v=wU_b2XH_w14

If you're interested in joining our team, or making a donation on behalf of our team, please visit our team page:

http://drmarnierosefoundation.racepartner.com/run-for-the-rose/bthobraincancer

As always, we will be ordering more BTHO Brain Cancer t-shirts this year and if you would like to order one please email me at glenzwhitney@gmail.com.

Dad completed another round of chemotherapy and Avastin treatment and managed to handle it all so incredibly well. We have another round of Avastin next week, and then we will be scheduling our next MRI. 

Thank you all for the love and continued support over these last 2 years. I honestly just looked at the calendar and realized it was 1/5/2016- as the 5th of every month has such a special significance, as that is the day in October that Dad had his seizure. This means we are 27 months post diagnosis, a number that still seems unreal to me. We are so incredibly blessed- I really can't say it enough.

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