Monday, August 29, 2011
Those words keep going through my head as we sang them in church yesterday. This is our story, this is the story God choose for us.
We had our appointment with Dr. Gross this morning. He is our neuro oncologist at MD Anderson. He was amazing. A wonderful, intelligent and up beat guy. He was very positive about David's tumor and gave us all the information about the tumor and what kind it is. And used a bunch of words that I really did not understand. So, you can refer back to David's post about the exact make up of his tumor.
So what's next? Now that we have resected 99 percent of the tumor? That we don't know. More waiting and MORE PRAYERS! There is still one more piece of information we need to find out from pathology that we have not gotten back. This is the one piece that determines our treatment. We need to find out the make up of the IP19Q. We need to find out if it is co-deleted or non deleted. This is what that means.
If it is co-deleted! That is good! That is wonderful! Pray to God for it to be co-deleted. If it is co-deleted that means that treatment would be either observation, radiation or chemo. Dr. Gross said if it was co-deleted he would suggested we do just chemo. Chemo would involve a pill that David takes Monday - Friday for 5 days each month. The Chemo would prevent the tumor from growing and hopefully shrink what is left. Then we would follow up with MRI's every 2-3 months. With this option he is confident David could go back to work as soon as he feels up to it.
If it is non deleted, not so good. This means that we have two options. Radiation for 6 to 8 weeks. Or to be a part of a clinical trial that involves radiation and chemo. The clinical trial would all need to be done at MD Anderson. Which would involve David's parents having a new bunk mate and David not being able to go back to work as soon as he would like:) Also, with radiation there can SOMETIMES be cognitive effects that you do not see for 5 or more years. But, that is a SOMETIMES. He said with David's intelligence and age he may not experience any of this.
We also asked the Doctor about long term survival. He said it could be 7 to 12 years. But, then again he can't say. He said he has a patient that had a stage four tumor and has been alive 19 years and is living a normal life hard a work. And then has a patient that had stage 2 and didn't live nearly as long. He was very positive about David and him beating this. I told the Doctor that I know this is not curable but managable. He looked at me and said I don't know what you are talking about. The advances we have already made and are making are going to make this treatable in no time. He was awesome. He basically told us he is our quarterback and he is going to put us where we need to go.
I also asked about diet. He said we can always try flax seed, tofu and green tea and Olive Oil. He said there is not fact that diet helps or prevents tumor growth. But, from people's personal experiences it has. Now, we just need to get David to fall for that!
I really hope that this answers every one's questions and not only ask for continued prayers but to Thank God for all the blessings he has already given us in this journey. We sometimes pray so much for our needs that we forget to thank him for the many blessings he has given us.
A lot of people have commented on our strength and faith and it is through this wilderness we are in that our faith has strengthened. I hope we have glorified God through all of this as that is our purpose on this earth. I do not know how any one could experience something like this without faith. God is the only solid and true thing we have and we hold on to that.
We love you all. We are heading home. We don't need to proceed with any appointments until we get our final pathology back. Hopefully by friday. Also, praise God for Dr. Gross and his impact in our life and for his knowledge.
Lots of Love!
Dana and David
Sunday, August 28, 2011
Yes, it has been a week and a half since surgery and we have our first post-op visit back at MD Anderson tomorrow, Monday morning with the neuro-oncologist. I spoke briefly with the neurosurgeon, Dr Rao, on Thursday last week. He relayed the preliminary histo-pathology report with the good news that it has a beneficial mutation that upregulated a gene which made the astrocytoma more susceptible to chemo and radiation, great news for me! Yeah!!
So, we are now headed back to my parents home to hang out with them tonight and then another clinic appointment to outline the next 6-12 months of my life with both chemo and radiation! Including life expectancy! I have always been fairly realistic and known that I would not live forever but I really did expect to live at least to eighty! We shall see what the doctor has to say about that tomorrow!
We will update the blog after we get more information.
We are so appreciative of all the wonderful and phenomenal support we have received from all of our friends and family scattered throughout the US and abroad in London (shout out to Jon & Lynds) We again thank everyone for all the support and prayers, do not forget to stop and pray for your family and give them a great big hug!
We love everyone
David and Dana
Audrey and Parker
Thursday, August 25, 2011
Today I got a great call from the Neurosurgeon, Dr Rao.
He had very good news, he indicated he had recently received the pathology report...here it is...
predominantly Astrocytoma Grade 3 with NO indication of Grade 4. (small area of oligodendroglioma) He also stated there was a mutation in the tumor which made it more susceptible to the upcoming Radiation and Chemotherapy that we will learn about on Monday from the Neuro-Oncologist, Dr Gross.
This should make the Cancer much more treatable and gives a much better prognosis, so Yeah!!!
So, great news Dana and I are so excited that everyone is praying for us!!
All is good and we love all the prayers, remember to pray for your family and yourselves.
Thanks for all the well wishes and we will keep everyone updated on Monday when we go to Houston.
David & Dana
Audrey & Parker
Wednesday, August 24, 2011
We called the neurosurgeon today and they are anxiously awaiting the results too, but have not heard anything. We do have a scheduled appointment monday in Houston with the Neurooncologist to figure out the next step depending on the pathology results. It will be so nice to go to that appointment and see what to expect from here on out.
We have loved being home and David has spent the past couple days resting. He was so tired once we got home and has enjoyed relaxing as much as he can. As with any surgery, it is taking his body some time to get back to 100 percent. The steroids have had the most impact, but he has started to ween on them, which will make a huge difference. Already today I noticed his upbeat personality coming back. He has been hanging tons with the kids and I and he had the luxury of going with some of his buddies golfing tonight. But, don't worry, his golfing included riding in the golf cart enjoying the scenery:) He is taking it easy but he is also SO READY to get back to work, life and normalcy. Anyone that sees him comments on how he does not look like he just had brain surgery! He looks so good!
The kids are doing amazingly well! And we are so blessed by all of the amazing things you all have sent them. What we have decided to do, is save the gifts for the kids until radiation and chemo start. We thought each day Daddy completes a day of radiation he gets to do something fun and they get something fun. We will pull out one of the gifts from each of you and make sure to let them know which special person it is from:)
David and I also spent the morning reading all the cards and opening all the packages. I wanted to do this with him when he was feeling better. We feel so humbled by all of the love out there. It truly is amazing and again such a blessing to feel so loved by so many people. The cards and the words of inspiration are huge in our healing and fight against this disease:)
Friends have also set up a care calendar for food, which I think is pretty much filled until October. This has BEEN SO NICE. For one, it has given us the opportunity to catch up with each person when they bring the food over. It is SO NICE to see everyone and to hear about you and your lives and the joys you are experiencing. And two, David LOVES the food:) As do I and the kids:) That has been super special to us.
It has also been cool to hear how many people are following the blog and praying and sharing our story. I had someone call my mom the other day and was at church in Ohio and they were praying for Dana Aynes's husband. How cool is that! You all are so amazing and your prayers are loud and God is listening to you.
I keep on wanting to thank everyone tons and feel sometimes that I am not showing enough how thankful I am. Saying that, I hope that you all know I thank God for each of you every night. You all have given us encouragement when we needed encouragement and most importantly prayed for us. David and I could not do this with out God and could not do this with out you. And I pray that I can someday show each of you how thankful I am for what you have done for my family.
Tonight I feel God holding those pathology results, saying " I hear you, but I need you to be a little louder" Please continue to pray for good results tonight and tomorrow.
A friend Lauren Lively gave us the book, The RED SEA RULES. I am so anxious to read this book and how it compares to the journey David and I are on. It is the biblical verses and stories that often remind me, God is not new at this. And how cool is it that the same God that led through the Red Sea is leading David and I against the fight of Cancer:) Wow! Pretty neat:)
Love and Hugs!
Sunday, August 21, 2011
We are headed home to Waco today.
We had a busy couple of days and it is good to be headed back home to our house, kiddos and Bella! We have missed them dearly and cannot wait to get home and relax. Mom and dad's house was nice but a little cramped and I need space to spread out!
We love all the wonderful texts and emails and prayers, so please don't stop, they are a true welcomed surprise and gift! Remember to say a prayer for your family, it is truly important.
We love everyone and really appreciate all the support.
David an Dana
Audrey and Parker
Saturday, August 20, 2011
Friday, August 19, 2011
It has been a wonderful past 24 hours and we feel God has graced us with health and happiness today. We got to see David last night and spend time with him and he was all smiles. He looks amazing and is talking 100 percent normal and acting 100 percent normal. Every time a doctor or nurse comes in to ask his pain level from 1 to 10 he says 1:) He has less pain then me and I didn't have brain surgery:)
I stayed with David in the hospital last night and got sleep when I could. The hospital was actually pretty comfortable and I slept great. The only thing that woke me up was David wanting to just keep chatting:) He is on very high steriods that are making him pretty gittery and not giving him the opportunity to rest much, which eventually they will taper off the steroids and he can get some sleep.
Right away this a.m. we were greeted by David's wonderful friend Barrett from Nebraska who flew in to stay with us. It was nice to go down to the cafeteria with Barrett and just chat. Barrett had someone very close to him go through the same thing 18 years ago and pass after many struggles. Barrett was just in absolute amazement at David's speedy recovery and at the medical science of the awake brain surgery they can do now and the interactive MRI. It is these two new things that help with saving lives of those with Brain Cancer. It was very reassuring to just sit and talk with someone that has been through this and also to be surrounded with such positiveness.
The neurosurgeon came in this a.m. and the first thing David asked was when he could go hunting:) The neurosurgeon said David is just doing amazing and that we could go home maybe by Monday. He said that we will make an appointment to come back to Houston to see the neuro oncologist that will set up the radiation and chemo that we can do in Waco. But, we can't start any of that until we see what the pathology report says about the tumor. Also, can't start radiation and chemo until his body is healed from surgery:)
David was already up and dressed in normal clothes this a.m. and ordering the nurses around. It was pretty funny. He is having a very hard time being the patient and not the physician. At one point he just told the nurse he would take care of taking his bandages off. Leave it to David:)
He is in such great spirits and we just feel so relieved. Although this surgery has been a wonderful success we still ask for strong prayers on the pathology report. This report will determine our weeks ahead. I am often reminded of the story of David and Golith and how God chose David to fight Golith. I keep reminding myself that we were chosen for this.
This a.m. I showed David all the pictures of the people in Green and he loved it! Made more smiles to his face.
I am back at David's parents house now, 1.9 miles from MD ANDERSON:) I needed some time away from the hospital. Although David is doing great, I am reminded that we are at a Cancer hospital. And we are surrounded by so many people young and old fighting this ugly disease. My heart just aches and I just keep offering them smiles whenever I can. The thing that keeps me going looking at all the saddness is that God will grace some of them with healing and they will fight this and God will also grace some of them with the end of pain where they will spend eternity with him. Either road is a good road although we may not understand it now. But, for me looking at the Good at both of God's options helps me to keep offering the smiles where I can.
I ask that you thank God for all the workers at MD ANDERSON, from the cafeteria staff to the doctors. They have all been trained to offer love and kindness to the patients and the family and we are in such a good place. None of them look at you with saddness but instead make the place such a happy and upbeat place. Thank God for their hearts.
I will update everyone.
For me it's Goodnight:)
Thursday, August 18, 2011
Right now, I write with joy. Because, we accomplished step 1. Surgery. And with God's help, Dr. Rao was able to remove 99%of the TUMOR without touching David's Corpus Collsium or effecting any of David's speech and motor skills. He said they also kept David up most of the surgery because he wanted to keep talking:) Leave it to David not take a break, even during brain surgery.
They are confident that the tumor that they removed is a Glioma. Glioma's are brain cancer tumors that are in the brain. Nowhere else. So, there is no cancer anywhere else, which is good. These Glioma's are rated on grade levels, 1,2,3,4. He is not sure what the grade level is until we get the pathology report back, which could be Monday. But, he is sure that surgery is just the first step of treating it.
He is pretty confident that we will need to do radiation and chemo starting in 3 to 4 weeks and that this will be for 6 to 8 weeks to get rid of any of the 1% of the tumor that is left. The good thing is, this can be done in Waco.
He said that David is already up, talking and able to move everything. God is healer. The biggest concerns today were surgery, how much of Tumor could be removed and what functions David would still have. And he is doing so well that the Dr. said David could be out of the hospital as early as Saturday. That brings me such happiness as I am anxious for my kiddo's to give him a big hug.
The journey of cancer is not done. We don't know any of the above for sure, until Pathology comes back with the results. I ask prayers to continue. To continue to have God place his hand over that Tumor and take away all the ugliness it would cause in David's life. These tumor's do come back and with treatement and monitoring we can live a normal life and David can do what he has wanted and go back to work.
There are also the scary parts, this Tumor being a high grade and heavier radiation and chemo. But, after long prayer with Breck I now hold on to the fact that with God all is not good in situation but all is perfect with his strength. And I am going to continue to focus on the positives of today, that my husband had a golf ball size tumor removed in his brain with no effect to his brain! Thank you God, you are miracoulous and are there when we call on you and even we do not.
I will update everyone tonight after we see David.
I have held so strong today and it is because of you. I told Breck the hardest thing of all of this is seeing my kids miss us and seeing David's parents and friends hurt. It is God shining through all of you that we made it through today.
Through this God has taught me, be thankful for today. And when you wake up tomorrow, be thankful for tomorrow. Be thankful for the breath he gives us every day. You do that and you have nothing but happiness.
Lots of Love!
It is incredibly difficult for the naked eye to differentiate between tumor tissue and brain tissue. MRIs are used toshow doctors what part is tumor and what part is brain. David and Dana fought so hard to be treated at MD Anderson because it is only at MD Anderson that David could be given an MRI during surgery, potentially catching left over tumor that was not caught by the initial resecting.
And this is exactly what he needed.
While the surgical team thought they originally got all of the tumor out, the MRI given during surgery showed they did not. It turned out the tumor exists microscopically farther than they expected.
So, the team is currently going back in and cutting out more of the tumor (and the brain tissue around the area) in order to make sure as much of the tumor has been taken out as possible.
David will not be woken up for this part. We suspect it is because the doctors feel confident that he does not need to be awake for this part of surgery and that they know what they are doing. But we all feel a bit of anxiety as we pray that the doctors will touch only what is necessary and not anything that would cause any lack of normal cognitive, speech or motor function.
While it is hard to continue to wait, it is obvious that the staff at MD Anderson is good. So, we know he is in good hands.
After this final resecting, the team plans to put David back together. So, we feel like we're on the home stretch.
We should have another update at 4pm!
In order to do this, the surgical team must confirm they are not taking out any vitally important portion of the brain. So, David is awake and is being required to communicate with them on how he is doing. The nurses are using flashcards to confirm David's cognition is in tact. David cannot feel them touching his brain.
David has been awake for about 1.5 hours. They typically want the patient to be awake for no more than 2 hours as it can be exhausting for the patient's brain to be stimulated for so long. So, we anticipate this part will not take much longer.
David is awake during surgery for only the middle part of it. He was asleep during the opening of his skull and will be put back to sleep for the closing of it.
So far, so good!!!
It turns out, it wasn't the doctor at all...but David himself. Apparently, while in the OR, the doctor wanted to have David talk to Dana. So, Dana says that for a few minutes she could just hear him. The doctors and nurses and David were all laughing. And then David started giving an update on how he is. He was saying things like, "I think everything is going ok. I can talk ok. I can hear ok. I think I can move everything. And I think my head is open."
Then, the nurse put Dana on the intercome. Dana said, "David, we are all waiting for you and love you." David's first question and response was, "who is all there??" So, Dana went through the list, which seemed to pacify him. And then, the call ended with David saying, "Love you, Miss you!"
We all laugh...both because it's so wonderful to hear from him...and because we are weirded out by the fact he is in the OR with his head open...and because it's just funny. How amazing is technology and medicine that Dana can talk to her husband during the middle of his brain surgery.
The best part is that David is just his same self. Dana's humorous remark after talking with him and realizing he was his self was, "is he ever gonna calm down?!" She knows her husband well. Whether at work, at play or on the operating table, David is not gonna let this tumor beat him!
The family is here (David's brother, sister-in-law, mother, father, Dana's father and David's good friend, an ENT doctor from Chicago). We are all sitting in a fairly relaxed but crowded waiting room. The nurses are coming by regularly to each group of families asking if they want their updates. They take each family back to a small room and inform them of the progress of surgery.
David and Dana's family just received their first update at 10AM. The update was he is doing well! They didn't get started until about 9AM and have now just "opened" him up. The next update will be at noon.
Dana is doing really well. She is as peppy as usual. But she's also tired...and, when more quiet, she shows her anxiety. But she says she's relieved. It feels good knowing surgery will be over soon.
When doubts filled my mind, your comfort gave me renewed hope and cheer. Psalm 94:19
We have arrived at MD Anderson this bright beautiful morning to have surgery!
Yesterday was a long busy day which included a handful of neuro-psychiatric and memory tests and then a really cool functional MRI, it showed areas of my brain that highlighted when it was stimulated by thoughts or movements! Very cool! My MRI tech's name was Jorel, Superman's Krypton name! Also cool.
I slept surprisingly well last night and feel well rested! Dana & I woke up in a great mood and ready for today! I wish I could have gone on a run with Bella and the kids, but I can do that next week.
Last night we had a great dinner with family and friends and this morning drove over to the hospital with Dana, my parents & Ron Dorsett, a very long term friend my brother and I have known since elementary school.
We have several family expected to come and sit today while I'm in surgery and I know Dana will have plenty of company!
I will head to the Operating Room at 7:30am
Surgery could last 6-8 hours! We are planning intraoperative MRI during the surgery and I think we are planning an awake craniotomy! That means 1/3 the way through surgery they will wake me up during surgery, take all the airway stuff out and said I will talk just like sitting in an office interview, only strapped down and my head locked into a clamp so I cannot move at all.
It is now 6:05 and I am in pre-op, gowned up with TED hose stockings.
Go to surgery at 7:30.
Thanks everyone for all the well wishes and prayers and cards and love!
Dana is a very special woman and she has been wonderful throughout this entire process! She is my champion and I could not have done it without her! I love her very much.
God bless all! We will update after surgery.
Wednesday, August 17, 2011
We are making many smiles as David is wearing a bright pink polo shirt today in the midst of all the dark blooming colors. He is in good spirits saying hi to everyone and making conversation. Everyone at MD Anderson has been so wonderful.
I have made a committment to myself once we get out of all of this I am going to volunteer at the hospital to pass out pepermints and coffee. The volunteers are amazing making us feel so welcomed.
David packed his bag last night full of polo shirts, cologne and kahki pants. I reminded him we are not going to Hawaii but instead going to have brain surgery. So, made him add some lounge wear in as well. Oh and lets not forget the bathing suit he packed, really?
He makes me laugh and I LOVE how positive he is. It is such a blessing and I know his strength comes from God and each of you.
We love you all and will continue to keep you udpated.
I do ask tomorrow that each of you sit down, whereever you are and whoever you are with and pray. Pray for healing, pray for recovery. God is BIG enough for this. And I thank God for the peace he has provided our family.
We love you all and will continue the updates:)
Tuesday, August 16, 2011
Our close friends Tom and Sheryl Carroll and their two kids (and Audrey's best friends) are staying at our house with Audrey and Parker just to try to keep things as normal as possible! We have been talking to Audrey a lot this past 2 weeks about the booboo in my head and that we have to have surgery to take it out so I will stay normal. It's funny, she will ask where it is again and then look, sometimes she says she sees it, sometimes not. She gave me her build a bear Hunter to take with me to the Hospital. (I named him & he is camo! & technically a gift from her to me from the neighbors).
We took pictures today as a family and that was great, I think Dana sent out a bunch of pictures! Brittany, the photographer is so special, she is a friend of a friend of Dana's and volunteered to take the pictures for us! Great photographer!
The girls from Bexley also put together a great music/photo collage on animoto, I hope everyone gets to see it, it is one of the few times I shed a tear! True masterpiece of our past 9 years.
So, we are on the road to Houston tonight to stay at my parents house then get up early for a full day of tests and consultations. We begin at 7:30a with lab tests then repeat MRI, then neuro-psych testing (cognitive tests) then another hi-tech neuro functional MRI then EKG and then hopefully finish with our anesthesia consultation around 1 or 2p. Super long day! That is when they will tell me what time to show up for surgery Thursday morning.
I am not really sure it has totally hit me yet! It has been quite a journey and I owe a million people a million prayers, and I plan on praying them back for many years!
I have had several very good and heartfull conversations with a lot of close friends about the whole ordeal, from initial symptoms and neurology consult then MRI. Thank all of you for your time and listening during those conversations as I am sure I rambled on, and I am sorry I could not call all of my close friends to ramble!
One thing that has been so unbelievably steady has been my lovely wife Dana. I often forget she is younger than me but she has been my champion these past two weeks! It is through her amazingly strong faith in God and all of her friends and church circles that we have all the support we do! Dana is my everything and without her I would be totally lost, I could never have found a better friend or companion through this journey or life! I appreciate her more and more every moment of everyday!
We look forward to a good day and relaxing evening and will keep everyone informed!
I will turn the blog over to Dana until I am back! God bless everyone and please continue your prayers for us and your own families! We love you all!
Monday, August 15, 2011
Parker, Bella and I took off for a 2.5 mile walk for about an hour.
Then, at 10am, Dana and I had plans to head to Temple for a full day of Debate and Discussion with anyone we could get an audience. I had plans to track down my good friend and boss Dr Stone and then map out my day. Peyton, our babysitter was due to arrive and I was jumping in the shower when the phone rang and Dr Stone told me he spoke with Dr Robert Pryor, the CEO of Scott and White Hospital system. Dr Pryor said that all was done and I would get full 100% coverage for all costs of all tests and all surgery at MD Anderson.
Wow, this is actually the first time I cried during the entire process. I immediately told Dana and called my parents. What a Blessing. What a relief.
Seeing the MRI with the big tumor was shocking but I knew it was just something I had to deal with and have removed.
I had long conversations on Friday trying to get someone at SWHP HMO, anyone, besides a secretary or clerk to listen to me and make the right decision. Then, on Friday night @ 5:15p I had a disappointing conversation with the CEO of the HMO, he was very pleased with 50% reimbursement. Obviously, Dana and I were not and we were planning on fighting this as far as possible to get the 100% we feel we and all HMO employees deserve!
So, Today is an amazing Blessing and we are so thankful to everyone that has prayed and supported us. It is difficult being on the opposite side of health care, I have spent the past 20 years working on the doctor side and it is good to see the perspective of the patient. Often, things in the ED happen so fast and the good and bad news is so instantaneous and then I am off to another room for some minor emergency. I try hard to spend as much time as possible with every patient but I have to rely on my support team to stay and comfort. (usually chaplain, Social worker, charge nurse & primary nurse)
I wish I had more time to spend with the patients and families, it is so vitally important and I see it more now then ever before. I hope this makes me a better doctor, one with more compassion and better listening skills. One that can convey the sense that I understand and I care.
Once again, thank everyone for their prayers and texts and calls, it is truly appreciated. Dana needs all the support, I am tough and can bounce through this. Dana has been absolutely wonderful and strong and a champion by my side and she needs you to continue to lift her up and keep her up.
Thank you all so very much. Kiss your family for us and pray for them as well.
Surgery on Thursday morning. Leave for Houston Tuesday night.
David and Dana
Audrey and Parker
Sunday, August 14, 2011
We have had great weekend as a family here in Houston! I had a lot of fun spending time with my extended family and friends. We went to a great dinner Friday night with kids and friends at Joe's Crab Shack and then yesterday the entire family and friends went to the community park and pool then returned for a Bar BQ at my parents, prepared/smoked exquisitely by my chef brother-in-law, Mark Oster!
We sat for hours and told stories and remembered all the pre-teen and teen years! Lots of baseball, football and hunting! Two of my longest and closest friends Ron and Glasson, were hanging out for the weekend and it was good to reminisce.
We had a good week and learned a lot. I am learning the other side of medicine, one that I don't like so much, the insurance and HMO Network side of things! It is a process and we are tolerating it, I am so thankful about the fact that I am so healthy and asymptomatic. I could not fathom Dana doing this by herself!
I will go this week to meet with the various doctors and administrators that is necessary to get the ball moving! We have surgery scheduled for Thursday but Dana & I talked long and prayed longer and we think it would be better to exhaust all our appeals and complaint options before opting to pay for half the surgery ourselves! SWHP HMO current offer is 50%. I need to convince the SWHP HMO that if SW NS is not going to perform the necessary standard of care surgery they need to allow MD Anderson to perform the surgery! There is also a reason MD Anderson is going to cost more, they will provide intra-operative MRI and an awake craniotomy and likely proton therapy radiation traeatments. Studies show long term survival is impacted by how aggressive and how much tumor is removed, so obviously I want it all gone!
So, we will be busy this week! We will let everyone know as we find out new information.
We truly appreciate all the texts and emails and tons of prayers! It is truly amazing the outpouring of support!
Pray for your family as well, we love everyone so much!
David and Dana
Audrey and Parker
I know a lot of you have had questions about insurance. We have insurance that will cover 100% if we get the work done through the Scott and White network. David spent long lengthy conversations on friday talking to SWHP and we are in an appeal process. God is stalling us for some reason, but we will be patient and continue to fight the insurance and this tumor all at once. We asked that tonight you pray for the individuals that are deciding on David's case. That their hearts will be softened and they will understand the severity of the case. Also, know that this is not a reflection on the physicians of Scott and White or the hospital of Scott and White. We are so blessed because all of these individuals including Hillcrest Hospital are willing to stand behind us and fight this for us. All of these individuals also have been using every contact they know of in the Scott and White Health Care Plan explaining David's situation and why this should be covered. Tomorrow, we will go to Temple and try to meet face to face with some of these individuals. Pray for the hearts to be softened and for patience on David and mine's part.
I had to share this today as I felt another way that you know God is right by you. David and I received devotional books from our wonderful friends Rosemary and Troy. We opened them up and read the days devotion.
Come to Me when you are weak and weary. Rest snugly in My everlasting arms. I do not despise your weakness, My child. Actually, it draws Me closer to you, because weakness stirs My compassion- My yearning to help. Accept yourself in your weariness, knowing that I understand how difficult your journey has been.
Do not compare yourself with others, who seem to skip along their paths with ease. Their journeys have been different from yours, and I have gifted them with abundant energy. I have gifted you with fragility, providing opportunities for your spirit to blosson in My Presence. Accept this gift as a sacred treasure: delicate, yet glowing with brillant Light. Rahter than struggling to disguise or deny your weakness, allow Me to bless you richly through it.
Isaiah 42:3 Isaiah 54:10 Romans 8:26
Learn to enjoy your life more. Relax, remembering that I am God with you. I crafted you with enormous capacity to know ME and enjoy My prescence. When people wear sour faces and walk through their lives with resigned rigidity, I am displeased. When you walk through a day with childlike delight, savoring every blessing, your proclain your trust in Me, your ever-present Shepherd. The more you focus on My Prescense with you, the more fully you can enjoy life. Glorify Me through your pleasure in Me. Thus you proclaim My Presence to the watching world.
Matthew 1:23, John 10:10-11
We both read the above and it just fit perfect. David is abundant in energy and full of life. He does not stop and sour upon this and still enjoys every moment. Me on the other hand have had my days and feel weak. We acutally laugh saying, I am experiencing sympathy brain tumor symptoms. Anyway, the above was perfect for our experience. It was a little later we realized we had the same book? And then we were wondering why they read different if we were on the same day? I was on the wrong day:) God is powerful, and solid. He does not leave us.
Love and Hugs,
Friday, August 12, 2011
Dana and I had another wonderful clinic visit with MD Anderson this morning. We met with a new neurosurgeon Dr Rao, 39yo father of twins that went to residency in Utah. He was a very likable guy with amazing charisma and very soft spoken. He made Dana feel very at ease and she and he bonded immediately. Dr Rao is well respected in the Neurosurgery field and often presents at lectures throughout the country. He wants us to have surgery in the near future and he is slated for surgery in the brain suite next Thursday and wants us there. This room is amazing with intra-operative MRI to perform MRI scans actually during surgery and is discussing an awake craniotomy, that means I would be awake to talk to them while they are cutting on my brain....ewww.
Dana and I have also been talking a lot lately about the incredible outpouring of support for our very unfortunate health dilemna. But I want everyone to know we are ok!!! I made sure of that during the past 9 years. I have secured our current financial position and we are a long way from being over-extended, even if I never go back to work, ever. I just won't be able to get that Porsche or Ferrari I have had my eye on :)
We have (had) a very healthy retirement account that we hope will grow into the future. And, I told Dana that before we could move to Texas we had to be completely out of debt except the house, that meant student loan debt..... which we paid off three months ago. Our cars are paid for and we have no credit card debt!!! Dana paid me such a wonderful compliment last week when she said she now understood why I pushed so hard for all this to occur.
We talked about all the offers for Visa check cards and gas cards and restaurant cards and cash and so on and so on. But we are ok. Really all we want are your prayers and well wishes.
Please, come by the house, see the kids, drop off a plate of food or just sit and hang out. We love all you guys and we know some are too far away but want to do something or give something but we are ok. Think of us when you have a brief quiet moment or a second when your mind is clear.
We want your prayers, lots of them, via email or text or phone call or silently or whatever. Pray with your family at dinner and at bedtime for all that God has given you and be thankful of the time you have on earth and look forward to spending eternity in heaven with him.
Please understand how much we appreciate the desire to give but it is the simplest prayers that mean the most.
We are so very blessed to know how much overwhelming support and love all of you are willing to give to us and the love you have provided my wife and kids.
You never quite get the opportunity to see how much people care about you until there is a situation like this and it is so overwhelming for us, but is a feeling everyone should feel in their lifetime.
David and Dana
Audrey and Parker
He told me how just in the past few years the research on Glioma tumors has increased and they are able to treat them better. He also told me how Brain Cancer is shocking to so many people only accounts for 20,000 people a year compared to the 200,000 that have lung cancer.
He believes he can take out almost all of the tumor and that David might not need radiation or chemo! Praise God! Dr. Roa also specializes in Glimoa tumors. Praise God again! But, we do still hold the fact that this journey will be long, but God has provided us with the strength to hear the good and the bad.
We talked about surgery. Everything is about 5% chance. 5% chance he could bleed or blod clot, 5% chance of spinal fluid leak, etc. He does not believe David's speach will be effected long term. He thinks that he can get it all out with out effecting any of David's daily functions. He said he may have some speech problems at first, but these will only last a week or two and come back.
He is very confident in the fighter David is. He said a lot of this has to do with David's health, his age and how his has not had symptoms yet. Which because David's brain is over compensating so there aren't any symtoms. New I married a smart man.
We just feel so positive right now. As far as insurance, like we said they approved the appointment today. Dr. Roa said he will call insurance for us. As David will be getting brain surgery at the Brain Suite at MDA Anderson. This way they can do MRI's on his brain while he has surgery. This is something Scott and White cannot offer. Dr. Roa gave us his direct number so he can help with the insurance issues, praise God.
As we were driving home, insurance called and said they would cover up to 50%. This is awesome and an amazing start, but we aren't giving up. With it only be covered 50% we will need to come to surgery next thursday with $100,000 deposit:) Lovely. We will fight for 100% coverage, but if we can't do that, we will take the 50% coverage and get the surgery done. Surgery will be next thursay first thing in the a.m. It will be an 8 hour surgery.
David is wanting to update everyone, so he will. And his terminology and grammar will be a lot better then mine.
Again, thank you for your love and support. David made the comment last night that he knows if anything were to happen, I am well taken care of with all the love and support and that is warmth to him. Our kids feel the love to. The devotionals I have started to file and am going to start journaling each devotion you all send. It brings so much peace with God.
Yesterday, was the first day I prayed for healing. Every other day, I have said Lord you know the outcome, give me the strength to go on this journey. Then a friend shared a verse on how God wants us to pray for healing. He is BIG ENOUGH for anything and he his miraculous! When I had my crying break down moment with God last night it was the first time I prayed for Healing and trusted that God can provide that too. And what do you know we had our first amazing appointment today.
We drove to Houston last night and I saw my first shooting star, another remind that none of us are a lone on any journey, God is right there walking it with you!
Love and Hugs to all!
This update is being posted by Breck.
Please cover the Hursts in prayer today as David and Dana are in Houston at MD Anderson for David's Psychiatric appointment. This appointment will help doctors monitor David's condition over time. Insurance approved today's appointment at the last minute but only with a $1000 copay.
We pray today specifically that God will give them peace and confidence regarding their appointment, finances and upcoming surgery.
"And the peace of God, which transcends all understanding, will guard your heart and your mind in Christ Jesus." Philippians 4:7
Wednesday, August 10, 2011
Many of us have longed to help the Hursts during their time of need. As post-MRI life has unfolded, Dana has begun to identify some of the family's needs. She asked that I would pass on. Feel free to forward this email to anyone who indicates they are interested.
There are several tangible ways to help the Hursts:* Notes of encouragement - Dana has indicated this has been much appreciated. All notes and cards are being read, kept and will be reread to David after surgery.
* Gift Cards for Gas - Houston is 3.5 hours away from Waco. So, the family has and will continue to spend lots of money on gas when driving back and forth between Waco and the hospital. Gift cards for gas will most certainly be used.
* Gift Cards for Food - Between appointments, traveling and surgery, meals are difficult to plan for in advance. Gift cards to fast food places and restaurants will appreciated. Suggestions of restaurants near MD Anderson and Waco include McDonalds, Chick-fil-a, Chipotle, Subway, Jimmy Johns and Panera. Both Waco and Houston have many of the national chain sit-down restaurants.
* Gift Cards to Walmart, Target and HEB for various items - Gift cards to Walmart, Target and HEB can provide resources for the family as they find needs pop up they didn't even know about. Various items forgotten while packing for the hospital, the need for laundry detergent while staying at the hospital or food to replenish an empty refrigerator during travels to and from Houston are just some of the things Dana and David may use with these gift cards.
* Meals - Meals have been coordinated from now until next week. However, the Hursts are in for the long haul. So, signing up for a meal in the future can be very helpful. Sheryl Carroll will be coordinating these meals. If you are interested in helping with a meal sometime in the future, please email her at firstname.lastname@example.org or call her at 254-722-2662. Some meals will be most helpful given warm. However, frozen meals may be better used as they can be used at the family's discretion.
* Devotionals and other items to encourage their faith - Dana has indicated any items that will encourage David and Dana's trust in God during this time would be much appreciated. A good devotional, a prayer journal, a hand-written prayer, a small framed Bible verse are just some of the things that could be encouraging to receive.
* Interactive Family-Child Activities or inexpensive wrapped gifts for the Kids - Quality time with the kids is a high priority these days. Some people have asked what the children need. The Hursts would appreciate any craft projects (like Make-A-Picture-Frame-For-
* A Provided Thank You Card (or better yet, saying "no Thank You Note is needed at all"!) - One of the most difficult situations about receiving a gift during a time of need is trying to keep track of who to send a thank you note to (and finding the time to do it!). So, Dana has suggested that it would be helpful if anyone who sends a gift provide a thank you note inside so that it may be returned with a note of thanks. (As a personal side note, I believe one of the greatest gifts to someone in time of need is the gift of no need for a thank you note at all! So, if you don't necessarily need one, please indicate no thank you note is needed. It will be a great gift to the family and will help minimize additional stress during this time of need.)
* Other items - Having never been through this before, Dana and David don't even know yet what they need. Things may not even know they could use include coins for the soda machine, snack foods to munch on, a comfortable blanket, warm socks, a box of chocolates, etc. Don't be afraid to think outside of the box with regard to gifts. Sometimes it's the simplest gifts that can mean the most!
**A note about Visa Gift Cards and money. Certainly generic gift cards can be used by the family. However, some of the national credit card gift cards have alot of restrictions on where and when a card can be used (for example some cards require registering the card first or using the card within a certain period to prevent fees from accruing). Please use your discretion. Also, cash may be used by the family on a variety of things such as food, gas and medical bills/co-pays/medications. If you have a purpose for a gift, please indicate.
Where to send cards and gifts:Since the Hursts may be traveling between cities, Dana's friend Amanda Pryor will be making sure all gifts are promptly given to the family. Please send all cards and gifts to:
David and Dana Hurst
c/o Amanda Pryor
727 Harvest Lane
McGregor, TX 76657
Amanda may be reached at 214-289-6765 or email@example.com.
If you have any questions or suggestions, please let me know.
David and Dana have felt a blanket of friends and love surround them through this time and cannot say enough about the overwhelming support they have felt.
On behalf of David and Dana,
Then I open my phone and email and I see the many emails and text messages, I see my husband who is still alive sitting next to me in a great mood enjoying the breath he has today. I feel all of you praying for us and feel so comforted.
Today we went to MD Anderson for a 9 a.m. appointment and met with the doctor. I will have to pass on all the medical lingo as I am going to let David do the blog tonight, but I felt I owed it to each of you to give you an update.
This is coming from me, the spouse, the non medical person, trying to gain an understanding of any of this.
First, David has most likely a level 4 Giloma Tumor. These Tumor's are cancer.
His has spread and is around his Corpas Collisium.
Risks, of surgery David waking up and not have his speech and other daily functions we need because of where the tumor is.
Statistics are statistics and David is a fighter.
We met with the most amazing Doctor who got to know David has a patient not just a statistic. He gave all the bad news first and then, this time the But that followed, followed with hopeful news.
Surgery is 4 to 6 hours and he could be out of the hospital as early as 3 to 4 days
To follow, 6 to 8 weeks of daily radiation and chemo, what this will do is hopefully kill the rest of what they could not get out in surgery.
The Doctor said with complete confidence that if all goes well, David could be back to work. A fellow Neurosurgeon at MD Anderson had the same kind of tumor and was back to work in only a few weeks.
MD Anderson is on the phone today with our insurance trying to get approval for us to continue care iwith them. If insurance says yes, Please pray for this, then we will come back to Houston Wednesday and have another appointment and then surgery next thursday. They don't want to wait any longer then that, and they also want to get everything in line before we do surgery.
We came back to David's parents house to rest and get some sleep, we are both so exhausted mentally and physically. Trying to get David to rest is difficult:) Doctor told him to take it easy and to relax. Not go running 5 miles like he does every a.m. :) We will go home tonight, spend time with kids. Go to our nephews final game tomorrow, 7 p.m. watch ESPN2:) You may see us. And then head to Houston friday. We will bring the kids to Houston for the weekend to have family time. Then come back monday get things together and David and I will return tuesday or wed.
I hear so may success stories from each of you and I hold tight to that, I also hold tight to God and how God can do all and a Tumor CANNOT!
Sweet Katie C. sent this to me today...
David will update blog tonight with all the medical details and I will send a pray list of all our doctors tonight if you would be praying for them. And also lets continue to pray for insurance to CALL us today and give us the yes:)
Love to all of you!
David and Dana are on their way to MD Anderson now. Dana said this morning that "texts this morning are so warming." So, they continue to appreciate messages of love and encouragement.
I wanted to clarify one quick thing I mentioned last night. Insurance has approved for David to go to MD Anderson but only for his initial consultation (the one that costs $17,000 out of pocket).
At this point, David has not been approved for any other care at MD Anderson. However, insurance has allowed David and Dana to go to MD Anderson while they work on their appeal. So, David and Dana are hopeful.
So, while this is very good news, we are still waiting to hear whether or not David will be able to be fully treated at MD Anderson. In addition, today's appointment will bring further news about treatment options. So, please continue to be in prayer.
Today, God, we trust you because we know that Your mighty hand is in control. Give the doctors wisdom as they meet with David and Dana. And give David and Dana complete peace that You, God, are in charge. We trust you, God, because we know you are good. Amen
"Taste and see that the LORD is good." Psalm 34:8
Tuesday, August 9, 2011
God has heard our prayers! This morning insurance denied any requests to be seen by MD Anderson. But, after lots of prayer, the Hursts received a call that the appeal (that was supposed to take 5 days but took an only hour!!) was granted.
David has an appointment at 9AM tomorrow (Wednesday) morning. Surgery has not been planned but is likely to follow in the next day or two.
Dana will update the blog will details tonight!!
In the meantime, if you are having troube getting to the blog, make sure you bookmark the blog/website and return to the blog that way. You cannot use the link provided in the original email more than one time because the link expires.
Monday, August 8, 2011
My mother-in-law has a plate on her wall that says a "Nagging wife will save your life!" I never knew how true that would be!
My wife notice some peculiar behavior in me during the past few months and really began to pester me about getting in to see a doctor. She said I was having these 2-3 minute spells when I would seem out of it, sometimes I would cuss (f-bombs) a few times and then say "i just don't know". To me it was nothing but after her persistent pestering, I called my neurologist neighbor friend and told him I needed to come in and see him for an official office clinical visit. He said whenever worked in my schedule, he would make it fit.
Dana and I went to see him last Thursday July 28th and we had a lengthy discussion where I sat there with my mouth mostly shut and listened as my wife talked about something I had no clue about. The doctor performed a complete neurological exam and found it to be completely normal, of course!!
However, we all know that all neurologists order an EEG and MRI's on every patient. In fact the nurse getting me in the room, asked when my last MRI was. Why should I be any different. So, mine was scheduled a week later, Thursday August 4.
I was confident my EEG and MRI would be normal because I was normal. Much more normal than all the wacky patients we see in the ED with wacked out complaints that are off the wall and totally normal complete work-ups.
Maybe that should have been my clue. Bad things happen to good normal people.
When I walked out of the MRI dressing room, the radiologist, both a dear friend & colleague was waiting for me outside the dressing room door. I laughed and told him that it is rare for a radiologist to be waiting outside the dressing room door to tell the patient their MRI is normal. I then jokingly commented, my MRI is normal, right? He gave me the look of "No"
We walked down the hall to the Interventional reading room, very private, and the first image on the screen was the one included here, my brain with a great big tumor in my left frontal lobe.
It is suspected to be a Level 3 Anaplastic Glioma (better than a level 4 but worse than a level 2) These are rarely of metastatic origin and usually amenable to surgery with often very good outcomes. I asked if I could be back to work in 1-2 weeks, the neurologist laughed said more like 6-8 weeks. Brain tumors are graded different than other cancers, level and stage is entirely different. But I will undergo all the usual body scan testing.
I have an appointment with the Scott and White Neurosurgery department Monday August 8 at 2:30 to discuss the plan of action and the timeline. I have been told that once you have the MRI the next step is to take it out. I am all in favor of taking it out but not so much the cutting my head open part.
As ED clinicians it is good to get the perspective of how such a big tumor could be in your head and have a normal life without any symptoms. I did have a few episodes where I would just go blank, I was awake but my mind struggled to get the next thought out. It has happened a dozen times during the past several months but I attributed it to acute distraction or being a little flustered. It only lasted about 30-60-120 seconds and I was awake and aware of everything during the entire spell. (and no I didn't lose urinary continence) I actually had a spell on Wednesday, the day before the MRI and my scribe Alysa actually asked me what was that? I brushed it off at the time and stated I just got temporarily off track and it took me a second to get back on track. Hard to explain.
The MRI is impressive and I have shared it with a few people, I hope you will use discretion, it does not have my name on it but I would rather not see my brain scan scattered around the hospital or you tube.
I did tell everyone that I want my job back as soon as possible!!! Also, I am sure I have left a few people off the email list, please feel free to use your discretion and tell them what you are comfortable with, obviously if it is in the here you can tell it.
As for any specific needs, Dana and I have been very blessed and truly the only needs we have are for all of your prayers and well wishes.
Thank you very much and God Bless everyone, just think!