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!

Hitting A Wall. Dad Update 5/5/2016

Yesterday, I felt as though I physically and emotionally hit a wall. You would think that I would be offended when someone says to me, "You look tired." But really, at that point it was all I could do to keep the tears from running down my face. Because I am tired. Emotionally tired. Physically tired. Overall I'm just tired. 

It's been a long month. Heck, it's been a long 31 months since Dad's seizure. And some days, and even some weeks, are easier than others. But this last month has been one that has truly pushed me to lean on my faith, family and friends more than ever. 

Not only did Dad's last MRI not look great, but lately he's been feeling just not good. I want so badly to take that pain away from him and do whatever I can to make him feel better- but there is honestly nothing I can do. So instead, I have to sit there during appointments and treatments as I hear him say and (very easily see on his face) that he's feeling down right miserable. 

And that itself is difficult to handle, and I struggle with reminding myself how LUCKY we are to have 31 months with Dad, and that some people would take our situation in a heart beat to have their loved one here with us. So believe me, I understand how lucky we truly are, but when you add together Dad's MRI, with his overall quality of life right now, and switching to Medicare- you can imagine the emotional and physical stress I'm having. 

The insurance world is an absolute nightmare. I'm still struggling to figure out every step, every "pre-approval" required, every document we need to complete, and every hoop I have to jump through just to get the treatments Dad needs covered (for the most part). 

I've dealt with Aetna, BlueCross BlueShield, and now...Humana (through a Medicare Supplement Plan). I've experienced  headache, after headache with each insurance company- so it leads me to believe that they are truly all the same. I've gone through appeal processes, I've written to the State Board of Insurance, and I've written to CEO's of hospitals. This all takes HOURS of time. I've been on the phone with insurance for over an hour before just for one claim, and I've called a hospital every day for 2 weeks until they paid us back for an over payment. 

And yesterday, I stayed on the phone for about 30 minutes questioning why an OLD insurance company had yet to process a claim and wanted us to pay over $1,500 to our doctor. I'm sure I'm on a list somewhere at Aetna, BlueCross BlueShield, probably the College Station Medical Center and (without a doubt) Scott & White- but I assure you that every claim I've questioned, every appeal I've fought- I've won. Some might have taken me over a year, but I jumped through every hoop the insurance company put my way and made sure my parents were not left with bills they should not be paying.

It's honestly, always something. And I know it could be worse, I know that there are many families that would LOVE to be dealing with insurance companies and Medicare if it meant their loved one was still in the fight- so I try to take it all in and constantly remind myself of just that- we are LUCKY. 

After everything yesterday, I wanted to just cry- but instead, it was back to work. I went to just vent to a co-worker, because sometimes I need to just talk through all of the stuff going on, and her response was so perfect and really helped to put it all into perspective. She wrote "Some days/weeks/months just really are harder than others and God is never surprised by what you are going through, he KNOWS it AND the outcome, so rely on His word, the peace that comes from it and try to give it all to Him as only His power can overcome it."

Oh how I've been repeating those words in my head over and over again. 

We are still in this waiting game, waiting for the next MRI, waiting to see if our treatments will continue or if we will be seeing a new doctor for clinical trial options- we are waiting. 

And throughout all the waiting we are needing to lean on our faith, and our friends and family more than ever. Just like Dad has good and bad days- so do we. There are days where we struggle with the realization of our life- one filled with chemotherapy, Oncology appointments, insurance battles, and the ongoing side effects of the radiology, surgery and mini-stroke. And although this "bad day" has felt more like a bad month, we continue to push forward and push Dad to continue fighting. 

Anyone can give up, that would be easy- but to hold it all together when everyone else would understand if you fell apart, that's true strength, and that's exactly what I've seen each day with Dad. 

As our next MRI approaches, we are asking for even more thoughts and prayers to be sent our way- we ask that God's hand help to heal Dad and continue to give us precious time with him. We pray that he starts to feel better and can continue to see what an absolute blessing he is to us, and to so many others.

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

A Small Bump In Our Journey. Dad Update 4/20/2016

MRI days are always difficult, and today's MRI results left us with lots of questions, a heavy heart, and a request for prayer in Dad's cancer battle.

Our MRI results today weren't great, but they weren't terrible. Let me attempt to explain the news we received. 

Dad's MRI showed increased enhancement where the tumor was removed. Which means there is blood flow to this area- and in the cancer world, blood flow is a source of growth for a tumor, and growth is the last thing we want. The amount of enhancement, compared to our last MRI, is small, yet there is still an increase. We do not know if this means we were lucky enough to catch the initial growth of the tumor, or if this enhancement is really nothing and just how the contrast was flowing at the time the MRI was taken. 

After a long discussion with Dr. Fleener, we felt as though our best option was to in fact wait four more weeks and re-perform the MRI again, while continuing on chemotherapy and Avastin. The waiting game is so incredibly difficult! But, taking Dad's current MRI to another doctor would result in the exact same outcome: waiting. 

This morning I came to my office to find my favorite "stress" drink (Diet Dr. Pepper) with a note that said: "Thinking of you this morning and hope that whatever the day may bring, you feel HIS presence with you..." Not to mention another co-worker brought me Starbucks this morning- have I mentioned I have the absolute BEST co-workers? 

But that note. What a wonderful reminder for this morning- HIS presence! And then I turned to my devotional that read:

"Do not be afraid, for I am with you. Hear Me saying, "Peace, be still," to your restless heart. No matter what happens, I will never leave you or forsake you. Let this assurance soak into your mind and heart until you overflow with Joy. Though the earth give way and the mountains fall into the heart of the sea, you need not fear!"

Talk about another wonderful reminder!

So we wait. Waiting is not fun. But we wait, not fearful of bad news, instead we wait confidently trusting the Lord to care for us, to care for Dad. 

This is not the news that we wanted to hear this morning. And this is not the news that I wanted to share. But it is what God has so perfectly placed on our path. It is part of this plan that I do not always know the reason why we have faced trouble, disappointment, and discouragement- but what I do know is it is all part of this amazing plan- that there is purpose to our suffering. 

We take the next four weeks and we pray, each day we pray that the treatments will work on Dad and the next MRI will look better- and we also pray that if it is God's will to help heal my Dad that he will do just that!

Dad is so incredibly strong. He's faced so many moments of suffering, and instead of turning away he's been able to fight through it all with faith, family and friends. I can't share how truly blessed we are to have such an amazing support group of friends and family throughout this all. 

I would be lying if I said we weren't saddened by this news we received today, but I would also be lying if I said we weren't HOPEFUL that the treatments will work and God's hand will help in healing Dad. 

When hope and hopelessness are both an option, we will always choose hope.

Asking for continued prayers throughout Dad's journey, especially in these next four weeks, as we continue our fight to BTHO Brain Cancer. 

Run For The Rose & Dad Update. 4/14/2016

I apologize, it feels like it's been forever since I've written any sort of update on Dad- but life has been a bit crazy lately (crazy in a good way!). 

This last Sunday we experienced our 3rd trip to Run For The Rose, and what an experience it was! We brought 98 people on team 'BTHO Brain Cancer- Lar's Fight', and raised $4,425- which means in the last 3 years we've helped raise over $21,000 to be donated to brain cancer research through the Dr. Marnie Rose Foundation. Our hearts are so incredibly full. 

We are so thankful that Dad got to experience another amazing trip to 'Run For The Rose' and see all those who are loving and supporting him on this journey! Thank you all who joined us for the run, came out to support us, bought a t-shirt, made a donation, or prayed for us on that day. We are so blessed!

To make this day even more memorable for us all, one of our team members won the 5k and then presented Dad with his award. And don't worry, we found the perfect place for this award to sit, right next to the article in the local paper focusing on Dad's battle. 

I wanted to make sure our team member, who won the race and presented Dad with the award, Kris Bartles, and his family knew how much that award meant to us, so I sent them the picture above and thanked them once again for being there with us on Sunday. And the response I received brought tears to not only my eyes, but Mom and Dad's eyes as well- we are absolutely so blessed with amazing people loving and supporting us on this journey:

"Kris told me driving to NRG Sunday that if he placed, he wanted to give the award to your dad. He is really touched by the fight your dad (and family) has led against brain cancer. He actually had an infection in his foot last Friday and when he came home from the doctor with his toes all bandaged up I asked how he was going to run. He pointed out how Larry doesn't get to take 'bad' days off...he has to fight through them.

I know you all never chose to have this ongoing battle against cancer, but your entire family inspires so many. Even on y'alls tough days, you keep the faith, dig deeper and continue to fight. We can only imagine the challenges and obstacles you face, but we see a family that is in the battle together. Keep your heads up and we will continue to pray for you all especially your dad. One day there will be a cure! And I pray your dad is able to be a part of it!"

Tears are filling my eyes as I read that response once again. 

To see the sea of maroon on Sunday, as we prepared for the Run For The Rose, gave me an extra boost, gave Dad an extra boost, and it gave my entire family an extra boost to continue to fight this disease. Some of our days are so incredibly difficult, but to know we have a support group filled with friends and family that continue to pray for us, love us, and care for us throughout it all makes this journey one that is not filled with sadness, but instead hope and love.

Dad starts another round of chemotherapy next week, followed by another MRI. These weeks of treatment and MRI results are always so incredibly stressful for Dad, and for our entire family. We continue to pray that the treatments are working for Dad and he continues to feel well throughout it all. 

Our journey fighting against brain cancer would not be the same without each of you following us every step of the way. You all help turn bad days into good days, you help make the stress quietly disappear, and you help take moments of hopelessness and turn them into moments of hope. 

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

Time Hop. Dad Update 3/22/2016

Recently I read a little quote: "Suffering is not the absence of God, if anything, it's the total opposite." 

Combine that little quote with my recent look at my "time hop" on Facebook, and I couldn't help but realize how incredibly true those words have been these last (almost) 30 months. 

Time Hop has a way of reminding you what you were doing exactly one year, two years, heck even seven years for some of my memories, from today. And Time Hop reminded me how far we've come in these last 30 months of Dad's diagnosis, and reminded me of the incredible amount of suffering we've endured, suffering that has completely been filled with God's grace.

One year ago I wrote the following (March 2015):
"I am so desperately trying to find the silver lining, the good in this situation, but I'm without a doubt struggling right now. Dad's cancer has once again attempted to test my faith and my determination to win this battle. I received a call this morning that Dad has appeared to have had a stroke. We are meeting with doctors this afternoon to figure out our next plan. Until then, I'm headed back to Texas and asking for lots of prayers for Dad."

And just hours later:


"Right as I pulled into Brenham, we received the MRI results- God's timing is pretty perfect. Dad's MRI did not indicate a bleed or stroke, although since he did have symptoms which show that something is going on in his brain, they have not ruled out that Dad could have had a small (very small) stroke, that is not appear on the MRI, or some swelling where his tumor was removed. Both him and Mom are headed home as we speak, and we have a follow up appointment in a week or so. His speech is improving, along with his right side weakness, which we pray will continue to get better each day. On another note, the MRI also did not show any tumor growth! We are going to take all of this as just a minor bump in the road, and continue on our fight against cancer."

And then two years ago I wrote the following (March 2014):
"This isn't the message I wanted to be sending out today after getting Dad's MRI results. The MRI indicates tumor growth. We start chemo and new treatment next week, and we will be meeting with a doctor in Houston. Please continue praying for Dad as we continue to hope and pray for healing."

Dad started another round of chemotherapy last night and we have another round of Avastin scheduled on Wednesday. Dad hates these weeks. I can see it in his eyes, and you can read it on his face. But, I continue to try and remind him how far he's come. 

We've hit a lot of bumps in the road these last 30 months- some have been filled with an abundance of suffering, but even more so these bumps have been filled with faith. I'm reminded of this faith from those stopping to ask about Dad and telling me that they've been praying- I can tell you we feel the power of prayer daily- and I'm reminded of this each time I get to watch Dad interact with his grandson, Luke. There is a purpose in the suffering, as it's reminded us what's really important in life. 

I joke and say that maybe we are the lucky ones- but maybe in fact we are. Because throughout the storms of Dad's battle these last 30 months, and throughout the storm he faces this week in treatment, we are able to smile at even the smallest moments of joy, love in even the most difficult of times, and continue to see the light in Dad's darkest days. 

I would never wish this journey on anyone, but if faced with something as difficult as Dad's disease, I hope others can see that the suffering we face now is nothing compared to the joy that is to come, and that the suffering we face now is not the absence of God, instead it's the abundance of his grace.

Thank you all for the continued thoughts and prayers, especially this week as we face Dad's difficult time with his chemotherapy and Avastin. As always, thank you all for your love and support, and thanks for helping us BTHO Brain Cancer.

Run For The Rose Update:

We have 80 team members and we've raised over $2,700 towards brain cancer research! We love to have each of your join us that day or make a donation to an amazing organization that continues to do great things in the brain cancer community!
http://drmarnierosefoundation.racepartner.com/run-for-the-rose/bthobraincancer

"Rest in My radiant presence." Dad Update 3/9/2016

Today, I turned to my devotional and read the following:

"Rest in My radiant presence. The world around you seems to spin faster and faster, till everything is a blur. Yet there is a cushion of calm at the center of your life, where you live in union with Me...Learn to depend on Me alone, and your weakness will become saturated with My Power...Life in the Light of My Presence, and your light will shine brightly into the lives of others."

Oh how it seems that sometimes the world is truly spinning faster and faster, leaving me exhausted- physically and emotionally exhausted. 

Days at the Cancer Clinic have the tendency to do just that, and I'm usually left exhausted. I think it's because I work myself up so much, thinking of all the questions I may have for Dr. Fleener, stressing about the next time she will want an MRI- as it always seems to fall around a time where I would prefer to not have an MRI, but then again when is a good time?- and mentally preparing myself to be in a place where I never imagined would become our second home. And these are the days that we do NOT get MRI results, it's too difficult to explain the emotions, anxiety, fear...you name it- that I have on actual MRI days.

Dr. Fleener calls us "frequent flyers" of the Cancer Clinic. We are there every 2 weeks for treatment, once a month for appointments with her, and every 6-8 weeks for MRI's. I know every nurse, each staff member, and they know us- all by first name. I know how to fix the chair just right so Dad can nap during treatment (which I'm getting much better at seeing the first few times he about flew out of the chair- sorry Lar!), and I know where the secret stash of bottled water is that Dad likes after his treatment. 

Yesterday's appointment for Dad went well, and Dr. Fleener is very pleased with how well he is handling the treatment and how well he continues to fight this disease. We were THRILLED to hear that the Cancer Clinic now has the ability to treat newly diagnosed Glioblastoma patients, and recurrent Glioblastoma patients with Optune. (See picture below)

Ok, so it looks a bit weird, wearing this cap on your head, carrying around a backpack full of batteries to supply the treatment- but y'all it's working on people! It's all so encouraging, which is why this is on my list for Dad's next treatment option!

I've always said that there is no coincidence, instead it's just God's way of remaining anonymous. Well, here goes some of God's incredible hand in all of this!

Dad's general physician's son- ok so that seems a bit removed from our family, so let me start over. My aunt is the nurse (and has been for years, also voted Brenham's Favorite Nurse many years in a row- congrats Joan!) for our general physician, Dr. Hayden. After Dad's diagnosis, my aunt mentioned what type of brain cancer my Dad would be fighting against, and my Dad's general physician told us about the device his son is helping promote and get to patients for a company called Novocure- which is the Optune device above. 

After Dad's MRI in November showed some enhancement and we were all concerned about regrowth, I immediately called my aunt and wanted names, doctors, details- I wanted it ALL about this device. We shared the name and phone number of our general physician's son, who works with the company that makes this device, and the doctor in Temple that utilizes this device for patients. Currently, our next option would be to travel to Houston or Temple to receive treatment with this device.

But yesterday we heard the news, Dr. Fleener's office would now be able to provide this treatment option to Glioblastoma patients! Currently, Dr. Fleener is treating 8 Glioblastoma patients in her office- for being such a "rare" disease it seems pretty unreal that there are THAT many with this disease. But we are so thankful that not only will Dad have this treatment option IF his tumor returns, but 7 other people will be able to utilize this device with their current doctor if they need it. Talk about a FULL FULL heart! 

Dad completed another round of Avastin, and I so badly wish I could do a countdown of the number of rounds he will have, or the number of chemotherapy treatments left in his battle, but unfortunately, these will never end. I see the bell at the cancer clinic and I so badly wish that Dad had the chance to ring that bell, indicating that he has completed his cancer treatment- but it's all just the nature of the beast we are up against. 

We continue to be so hopeful that Dad's treatments are working and we will have another good MRI in our future, but until then we continue to celebrate little victories and special moments- including Mom and Dad's 33rd wedding anniversary:

Another round of chemotherapy will be quickly approaching, along with our 3rd trip to Run For The Rose. We currently have 74 team members and we've raised $2,435 to help support brain cancer research through the Dr. Marnie Rose Foundation. We would love to have everyone join us on April 10 to help support Dad, and so many other families just like mine. Please consider making a donation or joining our team that day! 

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

As always, we continue to be so thankful and blessed for the wonderful support system of friends and family on this journey. Thank you all, and thanks for helping us BTHO Brain Cancer!