Thursday, September 26, 2013

MRI Results

I know many of you have the date set for September 27th...David's MRI. The big news:) But, with some changes in David clinically we made a judgement call to move his MRI forward. With help from some amazing people at Hillcrest Hospital, David had his MRI this past tuesday when we got back from Denver. 

Before I get to the results, you will have to read all the exciting amazing things first:) We had the most amazing time in Denver this past weekend. I can not expand enough how God made that happen. I was nervous beyond belief and knew the risk. I am SO GLAD we did it and so thankful for all the people that worked hard to make it the most perfect trip. David did amazing on the flight up and was anxious and excited to see all of his friends. They all drove and flew in and spent pretty much 48 hours just hanging out. Walking around the village if they could and eating when David felt like it. We had so many amazing waitresses that were patient with David while he struggled to order or got easily frusterated. Thankful for these people. As they had no idea the condition, but could sense something was not right. The staff at the JW Marriott in DENVER AMAZING! Team Hurst bracelets all over and shirts. Each day there was a special surprise. We showed up to a room of green balloons, cards, gifts and so many other special things thanks to Team Hurst. It was perfect. 

On Sunday, the day before we left, was a day that David woke up and things started to become off. This was hard as our first two days in Denver were great. When I say off, cognitively his word choice became confusing and his sentence structure. We have had days like this before. So, I continued to watch him and knew it would be a short time before we headed home. Once we got home from Denver , the next day, things did not appear to be getting any better. Confusion on simple things, you poor your drink into a cup not on a plate, to some short term memory challenges. We also started to experience continued steroid rage. With the help of SOME AMAZING guys and friends of David's we could calm him and reassure him we all love him and that he will be ok. It is amazing. Whenever I think we have hit our worse, one of David's friends shows up and my husband gains a new found energy to talk, to move to have joy. He finds so so much joy in his friendships. The kids have experienced all these people coming to help and I try to remind them to have friends you have to be a friend and their daddy is such an amazing friend to all these guys and now they are here for him. The kids are handling all these changes SO WELL! And simply talk to Daddy like they can understand him or just pass it off as nothing. Thank the Lord. 

The little girl who sits next to Audrey in school, sweet Katie, showed Audrey her green Team Hurst bracelet on monday. Audrey came home that night and said Katie has a bracelet why don't I? I guess I never thought of it. So, told her I would get her one. Her response was she wanted one for the whole class:) So, we did just that. Audrey also talks to me about the little kids at school who are coming to her showing their bracelets or telling her they are praying for her daddy. I think it is pretty cool to see this in all these little kids and says so much about their parents and their love and support for us. Again....another amazing. 

Now, to the MRI. I am shocked I did not post results right away. But, needed a few days to grasp everything and still am working on our what is next? The good news is, their is not substantial growth. The bad news, their is no shrinkage either . He still has that massive tumor in his brain. It also appears from the MRI that David has been experiencing some strokes. Poor guy:((( The docs here in Waco, were pleased and surprised that there was no new growth. The Avastin and radiation has bought us some more time. I am trying to hard to be so positive about this. But, what I see in my husband clinically is him declining rapidly. 

My heart aches as again, he is everything he never was now. Steroids have done a good job of David pretty much not wanting to have much to do with me, and to add the tumor is in his frontal lobe. This has screwed with David's personality in a major way and his rational. I wish that the MRI staying stable for the most part meant my husband was stable. But, I am not seeing that. Again, I called in the troops:) And David's parents are here with me helping as we pray and search for the what is next. 

So, what is next? I have no idea. I have been lucky to have two years to prepare for these difficult days. David and I talked in great lengths about these days and what could happen. He always communicated that he did not want to live like this. He knew this disease can cause you to become all that you are not and the medication can as well. It has become very apparent that I can not do this on my own any more and that it is time to call in some help. With a three year old and a five year old, I can not be mommy to them and wife and caregiver to my husband. Which has been extremely hard for me to accept. I choose being the loving wife was a better route and let someone else be the caregiver and bad guy giving the medicine. I will just swoop in after and give him all the hugs:) 

In the next 24 hours we will look at calling in care to help and make some decisions. Please pray that God will guide us. I want to honor David and all his wishes he expressed for 2 years. But, with your mind in a fog, and running after 2 kids while also trying to hold it together so you don't cry at the next commercial, it is hard to think straight lately. I just want that clear answer and looking for my little side kick ( the old David) and he hasn't been around lately:(((

Today, I became very concerned about David. He was pretty out of it. His breathing very heavy. Well, with a phone call to some of his amazing friends who also happen to be physicians, they were over in a jiffy. They even brought him a big old juicy hamburger, lately his favorite. I saw my husband go from not communicating to getting up ( slowly) to eat lunch. All the guys went to chow down and David said, " wait we need to say hope " and someone said grace? And david said yes, Grace:) And the prayer began.........

Even when he is completely out of it, cancer has taken over his brain, no energy, not himself, not coherent, he does not forget his love for his heavenly father and God's unconditional love for David and all of us. Thanking God for that moment today and reminding me....your husband has not forgotten my love and hope, and you should not either........
My last amazing:)

With Love, 

The Hurst 

Pictures from our Denver trip

Sunday, September 15, 2013

Do Not Fear

For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you. ( Isaiah 41:13)

We finished radiation this last Monday! It was nice to be done, as there was growing concern each treatment as David's cognitive health began to decline rapidly. Most of the concerns come with his word finding and him becoming easily agitated at most anything. After help from friends and David's local oncologist we convinced David to up his steroids and over time I have seen small improvements. Again, these are very small, but I will take it. 

I made a call to MD Anderson and the decline could mean two things. One, it could mean swelling of the brain. Which is caused by radiation. With the increase dose of steroids the hope is that the swelling will go down and that David will regain some of his cognitive strengths. The other concern would be that the tumor is growing. We won't know which one until the MRI at the end of the month. It is too soon to do an MRI as when you do radiation your brain is all lit up, ( best way to explain it). You can not tell the difference between what is tumor and what is swelling. But, the good news is, if tumor growth ( which I have no idea how it could grow any more) David would have headaches. He would also have decline in mobility. He has NONE OF THIS! Thank the Lord. All of his symptoms seem to be in line with swelling. 

We have had a busy week in a half with a house full of guests. I got to the point last week were I needed to call in help. I realized I couldn't keep it together for the kids, life and David. Trying to juggle it all and also be the best care giver for David became increasingly difficult. It has been so hard to care for someone that has become opposite of everything your husband ever was. I thought I had a good grip on things and then it was one evening when I prayed to continue to surrender myself to this situation that God laid it on my heart to call in the troops:) After a quick phone call, David's parents, brother and good friend came to spend a few days with David and our family. Boy did it help! My biggest fear is David feeling alone. With the exception of going to lunch with friends the rest of his day is hanging at home and resting. I know that if I was the one sick it would be so hard to see my spouse out living life normally and realizing that you can't. So with the help of David's family and friends they surrounded David with love all weekend. Just hanging out. Not much was needed, just being there. They even got the chance to take David hunting and spend some time with our Waco friends. It was so nice to have them here and also so nice to have them help me get some of those handyman jobs done in the home, hanging pictures, moving things to attic, changing light bulbs you name it. After Grandparents day they left and then my dad arrived a few hours later. He has been A-MAZING too. Spending time with David, helping with the kids and today him and I spent 5 hours cleaning our whole garage and helping me gain an understanding on what all this stuff was?! I never realized David had SO MANY TOOLS! I have a better understanding on what all this stuff is, but what it is used for???? Have no idea. I think my husband may be a hoarder when it comes to his tools and fun projects:))

We have had a lot of people continue to ask how are we doing this? My answer...I have no idea. Really and truly I don't. Each day has become harder. I wake up in the morning and wait for the first words out of David's mouth. Whatever those words are will determine our day! If he is with it and cognitively there, I have hope! If he wakes up and says something that makes no sense, fear creeps up on me and my day does not begin as hopeful. Each day is different, each hour is different. 

This week we had a new visitor join us. Well, join me. Some might think this is crazy, I even think it is crazy. But, lately when I am in the toughest situations, explaining to David why he can't drive, making him take his medicine, or just agreeing to something that makes no sense so he doesn't get frustrated, there is the David in this picture below right next to me.  Dressed just like this and looking just like this. He is sitting there encouraging me. Telling me, keep it up Dana. Don't let him be stubborn. You are doing all that you are suppose to. Don't give up. Remember, this is not him, this is what the tumor has done to his brain. It will get better. Seek your faith. He is CONSTANTLY encouraging me and the whole time he never stops smiling:)  

This all started when we had a rough night with Audrey. I had went to parent orientation at the school and left the kids with David and his parents. When I got home, David's mom explained to me that Audrey and David had a little argument. David was telling Audrey she had to eat all her mushy blueberries! Well, who eats the mushy blueberries? What he was trying to tell her was you have to eat all the blueberries but the mushy ones, but he just couldn't get it out. After them going back and forth , David finally said Audrey what do you want me to do ? She said daddy, I just want you to go to bed. This was hard to hear when I got home. And because David's emotions are not in tack like yours and mine he didn't really understand the hurt in her voice, which can be good he is shielded from this. Because, I know it would break his heart. So, I went up to her bed to talked to her and what  an amazing little girl....

Me: Audrey what happened tonight?
Audrey: Daddy wanted me to eat the mushy blueberries. I don't ever eat the yucky mushy blueberries. His medicine makes him so grumpy
Me: How does that make you feel that he is grumpy?
Audrey: Mad
Me: It makes me Mad to girl and it makes me Angry.
Audrey: Mommy, will his tumor and brain cancer go away?
Me: I don't know Audrey
Audrey: What happens if it doesn't go away?
Me: Then he will die
Audrey: I don't want him to die
Me: I don't want him to either. But, you know what happens if he dies?
Audrey: He goes to heaven
Me: Yes, and he waits for us. And we will see him one day. 
Audrey: Well then we have a problem
Me: What is that ( because my lord which one can she pick, we have so many)
Audrey: There is no way you can take care of Parker and I on your own

In my head... Oh girl do you know it. I desperately need your daddy! 

Me: Yes, it will be hard, but lets try a new game. Let's every night tell our favorite memory of the daddy we remember who was not grumpy on his medicine. Mine is when he would come home from work in his scrubs and you all would hear his truck and start screaming Daddy Daddy! And he would get on his knees and say Audrey and Parker and give big hugs! 
Audrey: My favorite memory is when he would then spend time with us tickling and playing while you made dinner. He was always so happy!  

And that was it...the end and we have done our memories every night. And since that night, my husband David, the one smiling has not left my side and been there encouraging me every step of the way, my own special and favorite memory that keeps me going every morning when I wait for those first words. 

Side Note: ( when i concluded this tonight, David walked in and wanted me to read the blog. I was hesitant and scared, but I did it. He had tears and cried like I have never seen him cry. We cried together and my David was there. He said I feel so much love from so many people. I don't feel myself getting better, but I feel love and that is what matters. I feel it in my heart and my soul from God and all these people. I told him I am not giving up hope and he asked that I and we didn't, but this sucks. i thank God for our moment of vulnerability tonight. And my dad being there through it, both of us encouraging him because for so long he has been the one encouraging us, he is so brave. And I am so proud to call him my husband). 

He is faithful,


Wednesday, September 4, 2013

Real Rebecca...Sunny Susie back tomorrow

Thank you to a friend who sent this today.... perfect timing. 

" Casting all your anxieties on him, because he cares for you, " 1 Peter 5:7

I don't know who has it the hardest when it comes to Cancer? Is it the person fighting it to not control their life? Is it the caregiver holding it all together? Is it the children that see the parent challenged by the daily hardship of it? Or is is the mom and dad who have the child physically taken over by it. 

When your little girl prays her prayer, " Dear Lord, we pray that daddy will remember our names tomorrow " or you hear your husband tell his life long friend that he is sad and fearful of the gradual loss of memory and down right scared, or you visit the home of someone fighting the same Cancer with months to live and then minutes later sign your will to make sure everything is in place for your own then stop and look back and realize, this was all experienced in one day? How can that be? And that is when you surrender yourself to your faith. Because at the end of the day you realize you have nothing else...... your life is empty with out it.

Please pray for our family today, tonight. The struggles are getting harder and the prayers are getting louder.  There are tough days like today, and there are great days to. Today we have started to notice some more memory loss with David. The loss is simple things like names of people and things. This is extremely hard when it comes to being with some of your closest friends and you love them, care about them, but you can't remember their name. The realization of this has caused fear in David. Not fear of death, but fear of being alive and not being cognitively able to communicate to his children, his family and his friends. 

This is plain and simple not easy.  When we got the diagnosis of Glioblastomia we knew what could come. We have had three Avastin treatments and half way through radiation.  Our MRI will be somewhere between September 27th - September 30th. Please know that our family is still positive in our faith, but we are also honest and real when their are hard days..... and hope our honest and vulnerability will let others know, we know trials aren't easy, they are tough, they suck. LIFE is not easy and it is OK to say it. No matter what your trial is , not one trial is too small or too large for our God. Thank you to so many people who have continued to spend time with David calling, taking him to lunch and being so patient and understanding with him. It has meant the world to him and our family. Thank you to friends who understand when we just need time as a family and know when this mama just needs to take a break from everything. 

I heard David talking on the phone to a friend about Colorado when this is all done. This is his place, his place where he is most connected to God's beauty. Pray this happens. Pray we can experience those mountains many more times. Pray for David's mind and heart to be at peace. Pray that he is healed from the effects of Brain Cancer and that our kids will be sheltered. Pray for more memories and the MRI in a few weeks. No growth, shrinking, and by GOD a miracle of no tumor. There are times I feel to weak in emotions to is in those weak times I know you all are carrying us in prayer so much so amidst the tears I continue to just say peacefully over and over .... " Lord, hear their prayers "

With Love,

The Hurst Family