Beyond Happy

" Whether you turn to the right or the left, your ears will hear a voice behind you, saying, " This is the way; walk in it,." Isaiah 30"21


This verse has meant so much to us in the past 72 hours. We asked you to pray for clarity. We were hoping to start a trial this past friday and we encountered a huge roadblock. Having some time to settle we realized that things couldn't get more clear then on Monday.  We anxiously awaited all weekend knowing that we needed to start some sort of treatment on Monday , but which one? What that treatment was, was in the hands of the insurance company. If they said yes, we would start the trial. If they said, no we would begin a path of Avastin and Lomustine. Duke confirmed both paths would be their route and that they believe we are in great hands at MD Anderson and taking all the appropriate steps. Duke doctors also stood by us and encouraged us to use any resources they had to fight insurance. We prayed and hoped it would not come to that. 

It's a Sunday evening, we are finally home and we just received a phone call from Scott and White ( again on a Sunday evening:)) that THEY WILL APPROVE the trial. We are beyond excited. We are anxious to try this trial. We are jumping up in down that we got a yes ! ( how sad if you think about it, this is our insurance company:())We are thankful to Glenn Robinson and Jim Smith with Hillcrest Hospital and Keith Stone and Bob Greenberg with Scott and White Hospital and many more, all who wrote letters and made phone calls the last 24 hours on our behalf. I hate that it even had to come to that. And really it shouldn't have. The problem we experienced and have experienced two years ago was with our insurance company Scott and White Health Plan. The lady on the phone this evening, was very apologetic for the wait and for us having to deal with this. I appreciate her sincerity and her efforts to make it right. I can't imagine her job and having to tell people no when their lives are on the line. But, tonight she made two people very happy. And I am pretty sure she was happy to have David's name checked off her list:) 

David will drive to Houston tomorrow to receive the medication for the trial and then home. We will do an MRI in four weeks to see if there are any changes. If the tumor has grown more, then we will stop the trial and pull our wild card of Avastin and Lomustine. Some may be asking why we just don't do Avastin now? There are many reasons Avastin can be both good and bad. With out me getting into details, David and I feel this will be our next and most reasonable step if the trial does not work. 

What we do know this evening, is that this is the way we are suppose to go tomorrow. That is about as far as we can think now.  We have researched so many other trials, including this one, that our minds are physicially exhausted. We are at the point were we continue to put all faith and trust in God as our ultimate healer and to continue to guide us with shall I say EXTREME clarity so we know we are walking the steps he wants us to take. 

As you pray for David please continue to pray for sweet Audrey. I will be staying in Waco tomorrow with her as the trips to Houston have worn on her and in a tearful rage she asked that we not go. With all the traveling and most of them starting in Houston for a doctors appointment or ending there, we thought tomorrow best that David go and I stay back with Audrey. So prayers for safe travels for David and for a peaceful heart for Audrey.

Thursday night I read one of the bible stories to Audrey and Parker in their bible book. It was about Joshua. A simplified version. Joshua had a small army and didn't know how he was going to fight the big armies. With prayer and God on his side they started to fight and kill off the larger arms and then the sun started to set. Joshua knew they could not finish the fight into darkness, so with his faith and hope in God he said, " STAND STILL SUN " and with that the Sun stood still and he finished the fight with his small army and God on his side. The title of the story, MIRACLES. All weekend and the next few weeks in my head I , with the same boldness and heart,  hope to have that same strong faith as Joshua and say...STAND STILL TUMOR! STAND STILL! Pray that prayer with me these next four weeks and boldness in your prayer and lets pray for this medication to halt that tumor and David to continue to have minimum side effects and create and live life with God's will in his heart. 

With love,

Dana 

No Trial

What a day. Words cannot express the mix of emotions we have experienced. We walked in to MD Anderson today, ready to begin this trial. Ready to start treatment and then to go home. Little did we know we would have a major roadblock in front of us. The past 3 weeks MD Anderson has been going to battle with our insurance . This clinical trial is with FDA approved drugs and the drugs are already paid for by a pharmaceutical company. But, to be in trial you need approval from insurance for standard MRIs , blood work etc. You also need approval if you were to encounter any hospital stays during this trial. We have been denied, denied , denied. They do not want to cover any sort of trial. This is very frustrating considering we have done two years of the standard treatment ( which we also had to fight to get covered) and David is a physician for Scott and White Health program and can not get coverage with their health care system. I am so thankful to Glenn Robinson, Jim Morrison, Robert Greenberg and Dr Keith Stone who have spent the last several hours trying to get a yes for us. The lady we need to say yes ( who has said no) was in a meeting till 5 today and unreachable. Hearing David on the phone with her assistant , was so disappointing. Her saying refusal because of potential complications from trial and David basically saying, I have brain cancer, trial or not I will have hospital stays. This is not something we have asked for in our lives , which sometimes fighting insurance you want to say to them.

We now leave with no medication , but with hopes on starting something Monday. If we can not begin trial we will pursue the other option of Avastin and Lilustim (sp?). This is a promising option and also received phone call from Duke today. They said to fight insurance and get in trial ( they even offered to contact 60 min) and that we are in good hands at MD Anderson. That the trial is a good option because David does not have significant side effects currently . When we do experience those then Avastin with a complimentary drug is promising.

So now we wait till Monday. I believe with all my heart God is trying to give that clarity that we are asking for. When it comes Monday, we have two promising options , both confirmed by duke and Md Anderson. the one we take depends on if we have insurance approval or not. Insurance will cover the Avastin route. I think we will have our clarity.


I am very disappointed in what we went through this afternoon and hope we can be a voice to others that may have to deal with this side of insurance. I am not done fighting or having a voice for this cause.

Who knows, maybe you will see me on 60 min one day:)

Trial tomorrow

David and his dad Ben. They decided to take a ride in Ben's Hotrod ( sp?) tonight in Houston

Our trip to Destin this past week. David and the guys got a chance to go fishing! Kids were anxious to greet them at the boat and see all that they caught!

I wanted to give a quick update as there are specific prayers we are seeking. I am so thankful to a group of friends who have rallied together this next 24 hours to pray for our family as we take this next step and begin our trail at MD Anderson tomorrow. I know all of you are praying for our family also and can tell you, the constant peace we feel is because of your prayers.

Our family decided after the news last week of more growth in tumor, that we would make a last minute decision to head to Destin, Florida with friends. We are so thankful for our friends the Yochams who knew this family just doesn't do good sitting around town and waiting. We were lucky for them to invite us to their family gathering in Destin and we were quick to say yes and get in the car again for another long drive. I think our children have forgotten we have a house, and think our new home is Florida every month. Thank goodness for summer and David's good health that we can get in the car and create more memories and spend time together as a family. It was a wonderful few days.

As we mentioned in the blog two weeks ago, we have a very good friend who connected us with one of the head doctors at Duke University Neuro/Spin Center, Dr. Henry Friedman. This doctor has been communicating with us with personal calls and been insistent on receiving our paper work and giving us a second opinion. We are very thankful for MD Anderson and love our care. We believe that this is the path we are to take starting the trial tomorrow in Houston. But, we also know the path that these trials can take. We want to be assured we have a back up plan.

The crazy thing about this though, is that with in one week from hearing from Dr. Friedman, we received a phone call from my mom who has a family friend who basically cornered a renown cardiologist at the James Cancer Institute fundraiser last friday, ( her name is Susie and she definitley knows how to get things done:)) She shared our story ( and a picture or two) and he was so amazing he gave her the personal cell phone of his friend a neuro/oncologist , Dr. Sampson at Duke University. Being married to a Physician, I can tell you, you normally don't just give your personal cell phones. With a few text messages to Dr. Sampson, Susie set us up to talk to Dr. Sampson via text. I texted him that we were currently working with one of his colleagues and that our paper work was being sent. Within 24 hours of this text  ( this past Sunday) we had two of the most known doctors in the country emailing us and calling us to get our MRI's so that they could give us their medical opinion. What does all this mean? I have no idea? It makes me more confused then ever!  We are waiting for tomorrow, where they will email us together what Duke can do for us and what trials they have. A lot depends on the mutation of David's tumor. For so long, I have felt so sure on our path. And lately I feel so not sure! Wondering where does God want us to go! What does he want us to do. I have said this before. I am not the best test taker. I am the one that puts A but then B and C sound so much better! Your prayers mean the world to us right now!  WE ask you to pray for clear direction. We felt clear direction when their was an opening for this trial that begins tomorrow. But, then we ask ourselves, what are the chances that we have two people ( that don't know each other) connect us with two prominent Duke Doctors? Slim. Tomorrow we will start and the trial is simple. We show up. Get our medicine, do some blood work and come back in 4 weeks. With MRI's in between to see if it is working.

Our conclusion now, is to take the clear direction of starting the trial tomorrow. And to continue to pray for God's direction if this trial does not work. Maybe our next option is Duke.  David still continues to have no symptoms. He did lots of fishing while on vacation and even won a hula hoop contest one evening on the Pirate ship boat adventure we attended with our kids. Don't let him brag too much about it either. And we have lots of pictures as bribery:)

We decided with the Yochams to take the children on a Pirate Ship adventure. It all seemed very cool to the older children but not so much to our 3 year old who was a little freaked out about the whole thing. About an hour into the Pirate Ship boat ride I took Parker to the top of the deck to just watch the water. It was only a few minutes after that, I heard one of the Pirates on their microphone yell, " Oh *&*^* " I looked down thinking oh my goodness, I cannot believe this pirate yelled this with all these kids all over! And I saw a swarm of people all in a frantic. And saw them all around David. Saying I freaked out is an understatement. I ran as fast as I could with Parker. Tears beginning. So worried. Did David have a seizure? Why are all these people surrounding him? Where is Audrey? Did she see?Only to find David kneeling down next to a lady telling her she was going to be OK he was a physician. He was there to take care of her. I think my face regained color at that point. And was reminded of David's amazing purpose on this earth. He got everyone calmed and got the lady taken care of. In my heart all I could think, little did this lady know or the 100 people sititng around that this man is batteling his own health right now, with a yucky deadly disease called Cancer, but you would never know, because he just won the hula hoop contest:) He is running around with his kids:) He has a full head of hair:) And he is the physician that was there to let that girl know...its all going to be OK.

Thanking God every moment for the wonderful adventures our family has had these past few months. And the amazing family and friends that continue to share our faith with us and hold us up in prayer.


Love, The Hurst Family

MRI - Waiting Game - Clinical Trial

Good evening everyone,

We just got back from our wonderful trip to Nebraska to see Aunt Mimi (Dana's sister Megan) and her  husband Brian.  We had a great car ride trip, stopping to see friends along the way, ie the Korpas' in Lincoln.  We saw lots of old friends in North Platte and visited some very familiar local spots.  We had a great trip.  We even had a surprise visit from Dana's dad, Dane, who flew to Omaha and drove out to see all of us.  Thanks Dane.  We also took advantage of being around for all the rodeo festivities of Nebraska Land Days, including the parade.

The past few days of getting back to home in Waco have been busy, firing off emails and faxes to various clinical trials we have been researching.  Many are thanks to your suggestion and research.  We are always keeping our eyes and ears open to what is out there. Sadly, all we are currently finding are trials. We are reminded that these are trials and not the cure, but have hopes that one day there will be a cure for Brain Cancer. We are so very thankful we have such a great prayer chain of warriors like all of you.  You are constantly encouraging us and it means a lot to our family. There are many days that you have no idea how much that encouragement means. We are all very excited about this next step in the process and look forward to the tumor responding appropriately.  Dana and I have been very faithful to our prayers regarding ourselves and all of you.

Today, I went to the hospital to obtain all my tests, 2 weeks prior to initiating therapy; labs, EKG, and MRI and will send them off to MD Anderson this week as well as carry them with me to my visit.  It will be 4 weeks since last Temodar on Friday June 28th and that will be the day we start the two new chemo pills, Everolimus and Sonafenib.  Both meds work to stop the process of replicating the tumor DNA, the tumor's process of growth.  We have very high hopes for this trial. The hardest part of all of this is the waiting.

The MRI today did indeed show a 30% increase in size in just the last two weeks but no new bad consequences yet.  I will stay on my Keppra, the anti seizure medication, as they are most concerned about this tumor causing some irritation and could cause a seizure. I was not to surprised, as that is what these tumors do. But, still did not enjoy seeing the report again and the little bit of aggression in the tumor.

We hope you warriors will continue to pray for good results as we will too. There is a lot coming in this journey and we appreciate the love you provide not to just Dana and I, but our children. We decided this week it would be best to get Audrey involved in play therapy. She is a smart little 5 year old and becoming more aware of what is going on. We are excited for this play therapy to be a place of comfort for Audrey and to open the communication dialog about Cancer with her. 

Please continue to send good well wishes and any clinical trials you have found and we will expend our full resources to review and research them all.  We continue to be positive in the one thing that is true and that is that God will carry us through this. He has walked this path before us and he is our strength in some of our weakest days. Thanks for all that each and everyone does for us, we truly appreciate each one of you.

Thanks so very much

Dana and David

Audrey and Parker

Friday, June 7 2013 Third Times A Charm

What a crazy past 48 hours... I have had many moments when I stopped and just reflected on what this all means? Three times? Three times we have seen this tumor, two times we have gotten rid of it.... and now we approach it the third time. I am reminded of all the miraculous things God has already done in our life! With the exception of surgery... we have lived with minimal side effects this past year and half.  Most would look at David and not even know he has Cancer. Sometimes I feel this is all just a dream because our life is so normal...and then we get these scans that remind us...it's not quite done yet. Today we went to MD Anderson with a lot of hope. We are all blessed with the knowledge and expertise of the researchers out there...who work day in and day out looking for a cure for not only Brain Cancer, but all the other Cancers. We are also blessed by all of you who have been spending time researching trials for us and looking for the best route in battling this tumor... we so appreciate and value your time and effort you spend helping us and being an advocate for our family. I have learned through this, we have some pretty smart friends:))))) I will let David explain more the route we have decided to go. But, first I wanted to share how the past 48 hours I have asked for a clear route for us to take. I have asked God..what are we missing? He has given us three times ( feel pretty lucky) to fight this...and I just want to know which route it is he wants us to take. And that is the prayer I ask from all of you. That we would continue to be guided on what is the BEST direction for our family. We want to make sure we get it this time. Today, I felt that clarification when the doctor sat with us and talked to us about the trials out there and the advantages and disadvantages of all. When she came to the trial that she believes is best for our family we were all ears. I will let David explain more, but when the researcher came in later and told us how lucky we were that today there was a spot open ( the last spot before the trial closes)  and we luckily met all requirements...I knew God molded that spot just for us today and this is the route we should take.....

Dana

So many things to be excited about and then so many things that could get you down if you let them. Dana and I would like to thank all our prayer warriors for all the prayers the last 48hrs.  We had a very encouraging visit with Dr Peñas-Prado here @ MD Anderson and have committed to a Clinical Trial at MD Anderson. She was very well prepared for our visit and even did some research as to which of the current trials were open.  She had three trials open that I was eligible for and recommended them 1-3.  She was most comfortable with the trial with the medications Everolimus and Sorafenib, both are currently FDA approved for use for kidney cancer patients and each work by blocking a pathway in the DNA replication pathway.  This is a multicenter trial with 118 total patients with 30 at MD Anderson, of which the research nurse said I filled the last spot.  Before I can start the new chemo, I have to wait 3 weeks to get the last Temodar chemo out of my system (of which I last took 1week ago). The side effects from these drugs are minimal and are FDA approved which is always good. We are thankful for our friends who have worked in research for GBM tumors and have provided and guided us with feedback on the many trials out there. We will begin this trial on June 27th, but will also keep our eyes and ears open to any new trials or developments out there. There are many and will continue research. The other amazing and blessing to this trial, there is no cost to us. We are beyond thankful for this too, but did not weigh our decision. We want to do what we feel guided to do and has the most successful results for tumors in the Brain.
Again, we trust in The Lord and accept the challenges He puts in front of us. We ask for prayers while we wait 3 weeks that I will endure know symptoms or growth. We want to thank all our prayer warriors both near and far for all the prayers and good wishes. Know that they are being heard.  We are confident in the path that The Lord is taking us down as we represent his will.

We will pray for good results.

Thanks

David, Dana,  Audrey & Parker

June 6th, Next Chapter

Good morning,

It has been about 3 months since surgery and I have recovered well and luckily still have no symptoms.

Dana and I pray everyday for continued good news and truly treasure all the days I get to spend with all of my wonderful family and friends.  It has been a busy spring 2013 as we have had several great trips. In April, we drove to Chicago to see both Dana and my great friends and help one of my best friend's daughter (Melissa) celebrate her Bat Mizvah.  Then a few great ski buddies and I had a great 3 day weekend skiing trip at Arapahoe Basin in May!!!  Then, Dana, the kids and I also took time to drive to Florida to see her cousin Katie and husband Eric then onward to the beach then over to see Grandpa Bill in Ocala and then to DisneyWorld.  Great Trips!!!  All the while, trying not to think about the big C.

Well, Friday is my next scheduled appointment at MD Anderson and I had an MRI today, second one post-op and unfortunately it shows a new spot.  It is about the size of the last one but a little less friendly.  It looks mad.  I have talked to a few friends and my plan is to call and discuss with MD Anderson that my MRI is abnormal and want to discuss a variety of options.  Especially the options of getting enrolled in some sort of trial or research protocol.  There are several available and as I said last month, they require active tumor and now I have what I least wanted.

So, we will accept this new challenge and attack it head on with strong support from God and all of our prayer warriors.  I am excited to rise to this new challenge as I feel we all have in the past.  Dana and I appreciate all the prayers you all have given us over the past few years and only hope to return your love by our faith in the Lord as our savior.  Please Pray with us as we continue the next chapter in our journey.

With all our Love
David, Dana, Audrey and Parker