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. 

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!

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. 

National Caregivers Month.

November is 'National Caregivers Month'. And I thought, in a month where we focus on being THANKFUL for so many things, it seems like a pretty perfect time to share how thankful I am for Dad's caregiver- my Mom. 

When I was just 10 years old I watched the battle against cancer through my Granny's eyes. I watched as cancer took her hair, her strength, and her energy. I watched, not fully understanding what cancer really was, or what her treatments involved, but I watched because my parents did not want us to be sheltered to that fight. And today, I'm so incredibly thankful for that. 

I watched as my Mom and my Aunt took turns staying with my Granny at night during those difficult days. I watched as they loved and cared for their mom throughout some of the darkest of hours, and I watched as they did this with unconditional love. 

I learned from both my Mom and my Aunt, even at age 10, what it meant to be there for those you love, to do for others "just because", and what it meant to lean on faith during difficult times. I learned what it meant to be a caregiver. 

And now, 17 years later I'm watching as an adult, who still doesn't fully understand the WHY in it all, but I'm watching with open eyes and such a full heart as Mom cares for my Dad. 

It's not just cooking meals, or helping with the yard, those things are wonderful and Mom goes above and beyond to do things around the house that Dad once did, because sometimes he just isn't feeling well enough to do those things- but it's the late nights when he's not feeling well, or just staying positive when it seems like all the odds are against us. 

She is selfless and strong. She is relentless and faithful. 

I think that Granny's battle 17 years ago really prepared Mom, and our entire family, for this journey. I think seeing my Mom and Aunt as amazing caregivers throughout her cancer journey, prepared me to know what cancer looked like- and sometimes it's so incredibly ugly. 

But I have always said there is beauty in our journey. And I know for a fact I wouldn't see this beauty without my incredibly strong, faithful and determined Mom. She has stood by Dad through some of our darkest days, and she continues to stand strong next to Dad on the journey ahead. 

So this month, I want to thank my Mom and Aunt for showing me what a wonderful caregiver looks like- someone who is selfless, faithful, and strong. And this month, I want to especially thank my Mom for all the sacrifices she has made these last 2 years- from the sleepless nights, to the early morning appointments, and everything in between- she's been the rock of our family, the faithful leader we all look up to, and the strength we all need (especially Dad) to beat this disease. 

Thank you to all the wonderful caregivers out there!

Dad Update: Chemo week is almost complete- and once again these two have handled it with so much beauty and grace. I'm so proud of both of them throughout this journey. 

Continue the prayers, as we continue fighting to BTHO Brain Cancer!

Chemo Week. Dad Update 11/3/2015

Chemo week has started for Dad, and the look on his face when he's reminded that he will be taking those pills for 5 consecutive nights absolutely breaks my heart. I wish there was a way I could take away his pain, the side effects, and the discouragement of chemo week. But unfortunately, I can't take away his treatment option- as it's been working so well these last 2 years to stop any tumor growth- but what I can do is to try to make him smile. I can try to help him look forward to each day, even if that day involves more chemotherapy. So, we've started a new tradition (you know us Aggies love tradition!) for Dad's chemo week....

Each day of the week, Dad gets a letter with some sort of "treat". These treats range from $5 movie gift cards, to having the house cleaned, or even a trip to HEB to pick up groceries for the week. Just something that makes life a little bit easier for both him and Mom, and something that I know Dad will appreciate. 

Here's an example of a little note Dad might get from me:

"You’re almost done with this month’s test,
Chemo week has us all very stressed.

But once again, you’ve handled it all with pure grace,
And dinner’s on me, you just name the place!"

The laugh and smile I get from that little note, and a little gift, makes me feel like I'm able to help Dad during these weeks. 

I wish I could say that chemo week got easier on Dad, but really the side effects become more cumulative as the treatments continue- meaning, the side effects continue to get more difficult to manage. But we try our best, and we constantly are trying different suggestions from Dr. Fleener. Anything to make these weeks just a little less miserable!

I'm so proud of Dad. I'm so proud of his determination and fight. As much as he hates these weeks, we remind him of the WHY in it all. And a big WHY of Dad's fight, is his little grandson, which Mom told me she tells Dad each night he takes chemo, especially when he makes that face of pure hate towards those pills, that he's taking those pills for Luke. 

We celebrated Luke's first Halloween this year, and of course, he had to go Trick-or-Treating to Mutz and Grandpa's house. That little boy has this entire family wrapped around his little finger. 

So what's up ahead of us? We choose to continue to LIVE throughout Dad's terminal diagnosis. We choose to take each day and become better and closer because of it all. Just last night as I stopped by Mom and Dad's to check on them, I watched as my oldest sister, Genna, picked up Luke from their house, and my other sister, Meghan, stopped by to say hi. I joke that their house is now a revolving door- and I don't think my parents would want it any other way. We are all in this together. We are all taking it one step at a time. We are all in this to WIN the battle. 

Dad still continues on his chemotherapy, and (even after 2 years!) is still consistently doing his speech therapy. Talk about a PROUD moment to come home and see him concentrating so hard on his therapy:

It's every day. And it's amazing to see the things he continues to excel in- math skills (which is awesome because he was the one who always helped us with our math homework growing up)! And the areas in which he struggles, but continues to improve each day. His brain is constantly healing, it is constantly working to repair the damage from the surgery, brain bleed, radiation and chemotherapy. 

We have a new normal. Chemotherapy, blood work, MRI's, and Oncology appointments have become our new normal. I ran into one of Dad's Oncology nurses at another doctor's office for my own appointment and when she realized who I was, mainly who my Dad was, she immediately gave me a hug and kept telling me how much she adored my Dad. And what a wonderful patient he has been. 

I will never fully understand the WHY in Dad's diagnosis, what I have started to understand is the WHY in our journey. Dad's purpose here in this physical world is so much greater than I could have imagined and is greater than I will ever understand. His story, his faith, and his attitude are touching so many throughout this journey, and most of all, I'm so incredibly proud to be his daughter. 

Continuing to pray the treatment is working to prevent any tumor growth, continuing to pray Dad has a good week while on chemotherapy, all while we continue to fight to BTHO Brain Cancer!