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!
Thursday, January 28, 2016
Wednesday, January 20, 2016
"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!
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!
Tuesday, January 5, 2016
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!
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!
Wednesday, December 16, 2015
The Best Christmas Gift. Quick Dad Update 12/16/2015
Our MRI yesterday read as followed:
"Possible slight improvement and definitely no significant worsening of the left middle cranial fossa temporal lobe signal enhancement and T2 signal changes."
The MRI looked BETTER than it did just ONE month ago, which means the Avastin treatment is WORKING!
We will continue the chemotherapy and Avastin treatment and repeat the MRI in about 6-8 weeks. Until then, we plan on loving every minute of this Christmas season, as we are so incredibly blessed that God has given us more quality time with Dad.
By all means, the cancer should have returned by now, so for me, the only explanation is the power of prayer. We are so incredibly blessed with the number of people praying and thinking of Dad during this journey!
"Possible slight improvement and definitely no significant worsening of the left middle cranial fossa temporal lobe signal enhancement and T2 signal changes."
The MRI looked BETTER than it did just ONE month ago, which means the Avastin treatment is WORKING!
We will continue the chemotherapy and Avastin treatment and repeat the MRI in about 6-8 weeks. Until then, we plan on loving every minute of this Christmas season, as we are so incredibly blessed that God has given us more quality time with Dad.
By all means, the cancer should have returned by now, so for me, the only explanation is the power of prayer. We are so incredibly blessed with the number of people praying and thinking of Dad during this journey!
Wishing you all a wonderful Christmas and a Happy New Year!
Tuesday, December 8, 2015
It's The Most Wonderful Time of The Year. Dad Update 12/7/2015
First, I want to share our beautiful Christmas cards this year. I was so thankful that a dear friend of mine came in from Katy to take pictures for us once again- she always does such a fabulous job!
Dad just finished another round of chemo and his second Avastin treatment. The chemo hit him pretty hard, but he handled it all so very well. We continue to pray the chemo and Avastin are working to stop any tumor growth, and we are especially hopeful for a good MRI next week.
As I look at these pictures for our Christmas card, I can't help but be so incredibly blessed for these last 2 years we've had with Dad. These have been extremely challenging, but also so incredibly rewarding. We've become so much closer as a family, and appreciate life so much more- especially the holiday season.
In a time where everything is so JOYFUL- Thanksgiving, Christmas, the New Year- sometimes we tend to get down on news that is far from joyful. But if there's anything I've learned over the last 2 years is to never question God's plan. To never think I can comprehend something that God has planned for us. I would have never imagined that my life would be filled with so much suffering, but I'm so thankful that I'm reminded that it's exactly what God has promised for us:
"Be prepared to suffer for Me, in My Name. All suffering has meaning in My kingdom. Pain and problems are opportunities to demonstrate your trust in Me. Bearing your circumstances bravely- even thanking Me for them- is one of the highest forms of praise. This sacrifice of thanksgiving rings golden-toned bells of Joy throughout heavenly realms. On earth also, your patient suffering sends out ripples of good tiding in ever-widening circles. When suffering strikes, remember that I am sovereign and that I can bring good out of everything. Do not try to run from pain or hide from problems. Instead, accept adversity in My Name, offering it up to Me for My purpose. Thus your suffering gains meaning and draws you closer to Me. Joy emerges from the ashes of adversity through your trust and thankfulness." James 1: 2-4; Psalm 107: 21-22
Oh how Joy has truly emerged from our ashes of adversity. We are on this incredible path. Some days smile and joy beam through us, and other days we are discouraged and filled with fear of the future. But, we are reminded that this path was so perfectly created for us.
We are unsure what Dad's MRI will show. We are unsure what the future holds for Dad's cancer treatment. But what we are sure of, is that we will be having a wonderful Christmas season- filled with family, friends and hope.
We continue to ask for prayers as we face another MRI and pray that it's God's will to help heal my Dad. Thank you all for the love and support, and from our family to yours, we wish you a wonderful Christmas season and a Happy New Year.
Continue the prayers, as we continue fighting to BTHO Brain Cancer!
Monday, November 30, 2015
I'm All Too Guilty Of This...Thanksgiving Update 10/30/2015
This morning I opened my devotional and it felt like God was hitting me right in the face with a message I so badly needed to hear.
"Problems are part of life. They are inescapable, woven into the very fabric of this fallen world. You tend to go into problem-solving mode all too readily, acting as if you have the capacity to fix everything...You are ever so limited in your capacity to correct all that is wrong in the world around you. Don't weigh yourself down with responsibilities that are not your own...Rather than try to fix everything that comes to your attending, ask Me to show you what is truly important."
So here we are one Avastin treatment in, with another one on Wednesday. And I still sit and think, constantly, what IF the treatment is not working, what is our next step. I stress on our next step. I take on responsibilities that no one asks me to take on- I take on the research and insurance information gathering, and I put the weight on my shoulders to make sure we are able to afford any and all future treatment options. Here i am thinking that I have the capacity to fix everything.
Because Dad has been feeling so well, because there have been no increase in his headaches or an increase in him wanting to sleep more, or any other cognitive changes- it's been hard for me to remember that the last MRI showed that Dad's cancer was on it's way back. It's been hard for me to remember that the nature of the beast Dad is fighting can and WILL return- it's always just a matter of time.
And I struggle. I'm all too guilty of trying to fix the problem before it happens. I over analyze things. I over plan.
And as I do all these things, I get hit in the face with this message of turning over these responsibilities to HIM. I can't promise that this will happen overnight, but I can promise that I will try. I will try to remember that I can not fix it all. That I can not take away this cancer from Dad. That I can not give him a perfect MRI.
Dad starts another round of chemotherapy today. He hates these weeks. It's so hard to see him feeling so incredibly terrible. The chemo knocks it out of him. And we try to be encouraging and supportive, but he's the one that has to experience the pain of the drugs. These drugs that have given us such amazing quality time with him these last 2 years. I can't help but be so thankful for them, and yet hate them at the same time.
Along with chemotherapy, Dad will have another round of Avastin this week. Thankfully, this treatment does not give him too many side effects- but it can be a long process that day if the chemo center is exceptionally busy. Long days are hard on Dad- especially on chemo week. But, we again are so thankful for both of these treatment options.
Thankful. We are so incredibly thankful that we had another Thanksgiving with Dad. I remember that first Thanksgiving after his diagnosis- we were in the middle of radiation and intense chemotherapy- it's amazing how far we've come these last 2 years. Dad was able to enjoy it all and continued to feel well.
"Problems are part of life. They are inescapable, woven into the very fabric of this fallen world. You tend to go into problem-solving mode all too readily, acting as if you have the capacity to fix everything...You are ever so limited in your capacity to correct all that is wrong in the world around you. Don't weigh yourself down with responsibilities that are not your own...Rather than try to fix everything that comes to your attending, ask Me to show you what is truly important."
So here we are one Avastin treatment in, with another one on Wednesday. And I still sit and think, constantly, what IF the treatment is not working, what is our next step. I stress on our next step. I take on responsibilities that no one asks me to take on- I take on the research and insurance information gathering, and I put the weight on my shoulders to make sure we are able to afford any and all future treatment options. Here i am thinking that I have the capacity to fix everything.
Because Dad has been feeling so well, because there have been no increase in his headaches or an increase in him wanting to sleep more, or any other cognitive changes- it's been hard for me to remember that the last MRI showed that Dad's cancer was on it's way back. It's been hard for me to remember that the nature of the beast Dad is fighting can and WILL return- it's always just a matter of time.
And I struggle. I'm all too guilty of trying to fix the problem before it happens. I over analyze things. I over plan.
And as I do all these things, I get hit in the face with this message of turning over these responsibilities to HIM. I can't promise that this will happen overnight, but I can promise that I will try. I will try to remember that I can not fix it all. That I can not take away this cancer from Dad. That I can not give him a perfect MRI.
Dad starts another round of chemotherapy today. He hates these weeks. It's so hard to see him feeling so incredibly terrible. The chemo knocks it out of him. And we try to be encouraging and supportive, but he's the one that has to experience the pain of the drugs. These drugs that have given us such amazing quality time with him these last 2 years. I can't help but be so thankful for them, and yet hate them at the same time.
Along with chemotherapy, Dad will have another round of Avastin this week. Thankfully, this treatment does not give him too many side effects- but it can be a long process that day if the chemo center is exceptionally busy. Long days are hard on Dad- especially on chemo week. But, we again are so thankful for both of these treatment options.
Thankful. We are so incredibly thankful that we had another Thanksgiving with Dad. I remember that first Thanksgiving after his diagnosis- we were in the middle of radiation and intense chemotherapy- it's amazing how far we've come these last 2 years. Dad was able to enjoy it all and continued to feel well.
We also received some more exciting news that reminded us again how THANKFUL we are:
Luke will be a BIG brother in July, as Genna and Chad announced they are pregnant. We are OVER the moon excited for another sweet addition to our family.
Dad has had the chance to watch Luke grow this last year, and will now get to help celebrate another grandchild to the family- we are so incredibly blessed and THANKFUL.
We continue to pray the new treatment is working and Dad's strength and attitude continue this week during chemotherapy. It's never easy, but this time of year helps us reflect on the things that are in fact the MOST important- friends & family. And we've been blessed with both amazing friends and family on this incredible journey.
Thank you all for the continued thoughts and prayers, as we continue fighting to BTHO Brain Cancer!
Wednesday, November 18, 2015
Well, Our Path Just Got A Bit Bumpy... Dad Update 11/18/2015
Well, it's not the news we wanted to hear yesterday. We wanted to hear "MRI looks great, no new growth." But, that's not the news we heard. Not at all.
Instead, we heard that the MRI has changed. We don't like to hear the word "change". The MRI is showing blood flow to the area (increased enhancement) where the tumor was located.
So what does this mean?
1. There is no mass or tumor currently in Dad's brain. YES- GREAT news!
2. There is no shift in his brain. YES- GREAT news!
3. There is blood flow and increased enhancement- meaning Dad's tumor feeds off of blood flow- so the last thing we want is blood flow to the area where the tumor was located.
Ok, so 2 of the 3 things we found on yesterday are GREAT news- but #3 up there, that one put tears in my eyes and left me with a feeling of absolute frustration.
So what is our next step?
Well, in March of 2014 we heard some devastating news as well, we were told the MRI looked bad- much worse than THIS MRI- and after just a few months of fighting Brain Cancer, we were all left in shock and disbelief. BUT, we started a new treatment called Avastin and it seemed to really help Dad- and his MRI's. Avastin is not chemotherapy, as Dad will continue on his chemotherapy pills every month- Dad's Oncologist feels as though these are continuing to benefit him, and we do whatever Dr. Fleener recommends!- but Avastin helps slow the growth of new blood vessels. Dad has very few side effects to the treatment- the worse part is sitting at the Cancer Clinic every two weeks for about an hour receiving the treatment. But he's a champ and we make him comfortable so he can nap the entire time.
After a brief fight with the insurance company- I swear those guys will never learn that I always win these battles!- the Avastin was approved yesterday and Dad already received his first treatment. I have to hand it to the amazing staff and nurses at the Cancer Clinic- the billing ladies and I are tight, as they've helped me through so many of our insurance battles and Nikki went above and beyond to help get his treatment approved yesterday. And the nurses, each one hugged Dad and kept telling him that they were going to help him beat this cancer again. Each one of them are so encouraging and sincere with the love and care they show Dad. To say we've been blessed with an amazing group of people loving and caring for my Dad would be an understatement- this group of people have become our second family and I'm so incredibly thankful for that.
After mentally, and emotionally, processing all the information yesterday, I immediately went into information gathering mode. I sent texts and emails inquiring about our next steps- that is IF the Avastin does not benefit Dad. I want to be as informed as possible and have every possible option available for Mom and Dad to discuss. Yet another reason I am so incredibly thankful for the Dr. Marnie Rose Foundation- one email, yes just ONE, telling them our situation and I was given names of doctors and clinical trials I should consider to enroll Dad in. I didn't have to hunt around on the internet, instead the information was sent to me and recommendations as to the BEST clinical trial results so far. We are so BLESSED to be part of the Dr. Marnie Rose Foundation- as their love and support has been something I've leaned on these last 2 years.
So it wasn't ideal. And with the holidays, this sure isn't an ideal time. But, we have to remember that God's timing is in fact PERFECT. I laughed this morning because I told God that I was frustrated, that all I asked for him was for a perfect MRI, so why couldn't I get exactly what I wanted? And then a quote popped into my head: "Not being able to fully understand God is frustrating, but it is ridiculous for us to think we have the right to limit God to something we are capable of understanding."
So sure, it wasn't the news we wanted to hear. I'm still mentally and emotionally processing it all, with some moments remaining so incredibly positive in our journey, and others completely confused and saddened by the path we have ahead of us. So when you see me in tears, it's not because my FAITH isn't strong and I do believe God's timing is PERFECT- it's that I'm human, my entire family is human, and I pray that God can heal my Dad. Because I truly believe he can, he will, but even if he doesn't, I'll praise him throughout it all.
Many families faced with a cancer diagnosis, especially one like Glioblastoma, aren't given the amount of time we've been given. So I'm going to focus on that- I'm going to focus on these last 2 years and what a beautiful gift of TIME God has given to me and my family. And I pray he continues to grant us this beautiful gift, if it is his will.
Thank you for all the continued thoughts and prayers on this journey, as we fight like hell to BTHO Brain Cancer.
Instead, we heard that the MRI has changed. We don't like to hear the word "change". The MRI is showing blood flow to the area (increased enhancement) where the tumor was located.
So what does this mean?
1. There is no mass or tumor currently in Dad's brain. YES- GREAT news!
2. There is no shift in his brain. YES- GREAT news!
3. There is blood flow and increased enhancement- meaning Dad's tumor feeds off of blood flow- so the last thing we want is blood flow to the area where the tumor was located.
Ok, so 2 of the 3 things we found on yesterday are GREAT news- but #3 up there, that one put tears in my eyes and left me with a feeling of absolute frustration.
So what is our next step?
Well, in March of 2014 we heard some devastating news as well, we were told the MRI looked bad- much worse than THIS MRI- and after just a few months of fighting Brain Cancer, we were all left in shock and disbelief. BUT, we started a new treatment called Avastin and it seemed to really help Dad- and his MRI's. Avastin is not chemotherapy, as Dad will continue on his chemotherapy pills every month- Dad's Oncologist feels as though these are continuing to benefit him, and we do whatever Dr. Fleener recommends!- but Avastin helps slow the growth of new blood vessels. Dad has very few side effects to the treatment- the worse part is sitting at the Cancer Clinic every two weeks for about an hour receiving the treatment. But he's a champ and we make him comfortable so he can nap the entire time.
After a brief fight with the insurance company- I swear those guys will never learn that I always win these battles!- the Avastin was approved yesterday and Dad already received his first treatment. I have to hand it to the amazing staff and nurses at the Cancer Clinic- the billing ladies and I are tight, as they've helped me through so many of our insurance battles and Nikki went above and beyond to help get his treatment approved yesterday. And the nurses, each one hugged Dad and kept telling him that they were going to help him beat this cancer again. Each one of them are so encouraging and sincere with the love and care they show Dad. To say we've been blessed with an amazing group of people loving and caring for my Dad would be an understatement- this group of people have become our second family and I'm so incredibly thankful for that.
After mentally, and emotionally, processing all the information yesterday, I immediately went into information gathering mode. I sent texts and emails inquiring about our next steps- that is IF the Avastin does not benefit Dad. I want to be as informed as possible and have every possible option available for Mom and Dad to discuss. Yet another reason I am so incredibly thankful for the Dr. Marnie Rose Foundation- one email, yes just ONE, telling them our situation and I was given names of doctors and clinical trials I should consider to enroll Dad in. I didn't have to hunt around on the internet, instead the information was sent to me and recommendations as to the BEST clinical trial results so far. We are so BLESSED to be part of the Dr. Marnie Rose Foundation- as their love and support has been something I've leaned on these last 2 years.
So it wasn't ideal. And with the holidays, this sure isn't an ideal time. But, we have to remember that God's timing is in fact PERFECT. I laughed this morning because I told God that I was frustrated, that all I asked for him was for a perfect MRI, so why couldn't I get exactly what I wanted? And then a quote popped into my head: "Not being able to fully understand God is frustrating, but it is ridiculous for us to think we have the right to limit God to something we are capable of understanding."
So sure, it wasn't the news we wanted to hear. I'm still mentally and emotionally processing it all, with some moments remaining so incredibly positive in our journey, and others completely confused and saddened by the path we have ahead of us. So when you see me in tears, it's not because my FAITH isn't strong and I do believe God's timing is PERFECT- it's that I'm human, my entire family is human, and I pray that God can heal my Dad. Because I truly believe he can, he will, but even if he doesn't, I'll praise him throughout it all.
Many families faced with a cancer diagnosis, especially one like Glioblastoma, aren't given the amount of time we've been given. So I'm going to focus on that- I'm going to focus on these last 2 years and what a beautiful gift of TIME God has given to me and my family. And I pray he continues to grant us this beautiful gift, if it is his will.
Thank you for all the continued thoughts and prayers on this journey, as we fight like hell to BTHO Brain Cancer.
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