The race is on!!!

This is a photo of Dan, "Dr. Nick," and Dion!

Dan and I are so excited about the Tower of Terror race this weekend! We are having a "pep rally/open house" this weekend for those of you who want to stop by before the event. We are going to take photos and just give Dan a boost of encouragement. Please feel free to stop by for a quick visit between 3-5 pm. Unfortunately, due to the importance of keeping Dan as germ free as possible, we are trying to limit the number of small children (and adults with colds) here at the house. Please help us keep Dan healthy!

For those of you who are running, don't forget to pick up your race packet at Pleasure Island Motion on Friday from 3-8PM or Saturday from 10AM-4PM. There are party tickets still available for those of you who just want to join in the fun.

This weekend is so special to us. Dan set this date months ago when we needed something to work towards and it is exciting to finally be experiencing it. Family and friends from all over the country will be here for the weekend.

Last weekend was another milestone for us. Dan and I were able to meet with Dion and his wonderful wife, Sofie. They took time out of their family vacation to sit down with us and share their GBM 4 battle experiences. For those of you who are new to our journey, Dion is a GBM 4 survivor (6 years from diagnosis/tumor removal). He and Dan met through divine intervention. Dion has mentored and encouraged Dan throughout this process. This past Monday, Dion had his annual MRI and it came out clean (praise God)! Dion and his wonderful wife are a huge source of encouragement for us.

I look forward to seeing many of you on Saturday. I will post photos as soon as I can.

Lots of love,
Leah (and Dan)

Going To Duke!

Hello friends and family! A lot has happened since my last post so here it goes. First of all, because of my association with the Tug McGraw Foundation I was contacted by none other than Dr. Henry Friedman from Duke University. He called me the Monday after my M.R.I. around 10:00pm! My caller i.d. showed the number as Duke Hospital so the man was still working that late at night! Talk about a workaholic! Our conversation was very short and to the point. He commented that I had a "...beautiful resection..." referring to my surgery. He then asked who my Oncologist was, whom he knew. (Dr. Nick) He then stated the exact protocol that Dr. Nick had already prescribed and said that he did things a little bit differently. (Dr. Nick has prescribed Temodar only and apparently Dr. Friedman likes to use what is called a 'cocktail', a mixture of Temodar with some other chemo and auto-immune drugs thrown in.) We then talked very briefly about my medical past and current situation. Dr. Friedman then said it was time for me to decide if I wanted to be a patient of his. He asked me to contact his office when I had made my decision. We were off the phone before I really knew what had just happened. I consulted Leah very quickly and called Dr. Friedman back directly. He answered the phone and I told him I wanted to be a patient of his. He answered, "Very well. I will set it up. Goodnight." That was it. Wow! I had just become a patient of the Preston Robert Tisch Brain Tumor Center at Duke.

In case you don't know how significant this is, I will tell you. First of all, Duke is considered the top brain tumor center in the world. When I first received my diagnosis I was told there were three centers that were the best in this particular field. Sloan Kettering in New York, M.D. Anderson in Houston and Duke in Durham. Of these three Duke is considered number one. Leah and I talked with Dr. Nick about this before I even started my initial round of chemo and radiation. The problem is that none of these centers will see you until you complete what is considered the, "Standard Quality of Care." (This is the first 6 weeks of chemo combined with radiation. Apparently every center across the U.S. treats this tumor in a very similar fashion for the first phase.) After the 42 day program you get your M.R.I. and send it for review to the program or programs you want to become a part of. If you are contacted and accepted, you get to go. I know for Duke the criteria was very specific. The tumor has to be a primary brain tumor, no metastatic brain tumors. (Sorry, Lance. You wouldn't be allowed. For those of you who don't know, Lance Armstrong's tumor was not a primary brain tumor. His tumor came from somewhere else in his body.) They also want operative reports, discharge summaries from the hospital, chemotherapy treatment summaries, radiation therapy summaries and my last 2 or 3 lab results! But wait, that is not all! They also have to confirm my pathology! Apparently this entails contacting OncoTech out in California who has my frozen section from the surgery and obtaining slides of my tumor. And, lastly, they want my last two M.R.I.'s for review. Whew! What a list! The good news is we were accepted and have appointments scheduled for December 10 and 11. The two day appointment looks very thorough. We will spend about 3-4 hours each day meeting with Neuro-Oncologists, Physician Assistants, Nurses, Social Workers, Child Life Specialists and any other specialist who may be able to assist Leah and my family.

Initially I was worried about confronting Dr. Nick with the news of a second opinion. I just met with him yesterday and he was wonderful. He informed me that there were only a few centers across the U.S. who's opinion he respected and that Duke and Dr. Friedman were one of those. He went on to say that Duke has a lot to offer that Florida Hospital does not as far as experimental treatments go. Dr. Nick feels it is a good idea to keep Duke in our back pockets should some of the programs they offer become necessary. As upsetting as that sounds, it is the unfortunate truth. Just because I had a clean M.R.I. does not mean this battle is over. I am fighting a war with this cancer that is going to have many individual battles over the course of the next few years. The fact that my new chemo regimen is prescribed for 2 years is indicative of how serious this is. As I have said before, we are not out of the woods yet but we have found the path that can lead us there.

Dr. Nick does want to meet with me as soon as I get back so we can discuss some of the treatment options that Dr. Friedman recommends. He plans on remaining my doctor which is exactly what I was hoping for. I think Dr. Nick is wonderful and incredibly smart. I value his opinion very much and still remember that night in the hospital when he actively came in and sought me out as his patient. Even in my morphine haze I still remember that night, although I also recall drifting off to sleep as he was explaining to me the nature of my condition.

Now on to other news. I just completed my first dose of my second round of chemotherapy. I received the Temodar on Thursday of last week ironically the same day that I began to feel the symptoms of a bad head cold. Luckily Dr. Nick took mercy on me and prescribed me a Z-Pack which I began the same day as the chemo. I can't tell you how this second round affected me because I felt the cold so badly. I was sleeping all the time! Where I normally get up between 5:00 and 6:00am I was sleeping until 9:30am! I felt like a slug! During the second phase of my chemo the dosage has been bumped from 165mg to 445mg! I took my last dose on Monday night so the 23 day wait period began on Tuesday. I will start my next round of chemo on November 12th. Sometime after November 17th I will be scheduled for my next M.R.I. During that month, we will be taking a Disney cruise to focus some time with the children. I am assuming that I will have the M.R.I. sometime after I get back. Part of the new secondary treatment is a M.R.I. after every second cycle. Do y'all have any idea how uncomfortable one of those machines is to get stuck in for a half hour every two months? Now I know what a sardine feels like getting stuffed inside of that can. Not only that, but the machine is VERY noisy during the exam. Also, technicians expect you to be absolutely still during the test! Very frustrating!

Our family continues to do well. I am very excited to see the U.S.F. bulls ranked by the BCS standings as number two in the nation. This is where Leah and I met and fell in love. It is very ironic to me that this cancer has changed my life as much as it has. A lot of people think that what I have is terrible and they are right. This cancer could ultimately take my life. But what it has done for me since my diagnosis I would not trade for anything. I have a whole new perspective on life, God, family and happiness. My priorities are completely different from what they used to be. Quality time with those I love means more to me now than ever before. My relationship with God means more to me now than ever before. I can not wait to get out and see the world with my family and make memories that will last a lifetime. Thank all of you who have been so kind through all of this. Your kindness and understanding have been appreciated. God bless all of you.

Love,

Dan and Leah

Round 2

Leah's Bible study group in "Team Dan" gear!

Dan couldn't have a sweeter cheering section! (Can you believe these beautiful women have 18 children between the 5 of them.--They really know what it means to be patient and persistent!)

Go Team Dan! "Be strong!"

Happy Monday!

I have been quite remiss in my posting duties, but I truly didn't know what to write following Dan's own words. He is such a source of strength for me. I have been blessed and humbled by being able to see what he chooses to share on this blog site.

Dan's battle with cancer is far from over, but he is steady and strong. We will not know what the "shadow" on the MRI is for at least another month. It could be radiation effects, surgery residue/scar tissue or cancer. Dan starts chemo this week, so please pray for the chemo to really penetrate and eliminate any residual cancer cells.

We spent the weekend in Vero Beach with my family. It was restorative to be with with my mom and dad. They got up with the children each morning and gave Dan and me a chance to just enjoy each other. Sunday morning we went to Trinity Episcopal (my childhood church) and it was like coming home. The priests and the congregation there are so "on fire" with the Holy Spirit that it is just amazing to worship with them. We really had fun visiting with many of the wonderfully faithful friends that have been lifting us up in prayer over the last few months...Thank you.

Many people have asked me how Dan got his tumor. We don't know. Somewhere around 95% of all people with GBM's don't know how they got them. There are warning signs to look for which include: headaches, which can be most severe in the morning; nausea or vomiting, which can be most severe in the morning; seizures or convulsions; difficulty thinking, speaking, or finding words; personality changes; weakness or paralysis in one part or one side of the body; loss of balance; vision changes; confusion and disorientation; and memory loss. Different parts of the brain control different functions, so symptoms will vary depending on the tumor's location. If you are having any of these symptoms go to the ER and get a CAT scan.

Dan and I feel very blessed to have been reminded about the temporary nature of life here on earth and we appreciate each day that we have with one another. We are living each day to the fullest. Like a good steward, Dan has taken many reasonable precautions to ensure for the welfare of his family. The one that I appreciate most has been the fact that he has proclaimed his faith in Jesus. I cannot imagine facing the trials that come in this temporal life without the assurance that Dan and I will have eternity together. Our faith not only gives us the hope of eternal life, it gives us the hope for total healing. Healing comes in many forms. We praise God for the gift of healing Dan and we humbly ask, that if it is in God's will, that Dan will be free of cancer as well.

Lots of love,
Leah

Just so that you can see the type of support that we have here (in Celebration) I am going to add a photo of my women's Bible study. I arrived last Monday to see the ENTIRE group in their "team Dan" gear. I have heard rumors that the staff of the Fitness Center here in Celebration had another "team Dan" dress up day. I will add that photo when I receive it!~L

Fridays Appointment

Hello to all! As many of you already know we received a report Thursday night from Dr. Nick's wonderful nurse that my M.R.I. was clean. That was wonderful news! I had the best nights sleep I have ever had in a long time that Thursday night. The next morning at 10:30am we sat down with Dr. Nick to go over the results of the M.R.I. and to plan out the next phase of my treatment. (We also had a lot of questions for Dr. Nick which he dutifully answered.)

The first thing Dr. Nick said was congratulations on the M.R.I. scan. Just that morning he had a conference with the other Neuro and Oncology Doctors from the area and one of the cases they discussed was mine. Dr. Nick showed my pre and post M.R.I. scans and the whole group was in agreement that I was responding very well to the first round of treatments. One of my scans did show a small area of white density around the tumor site that was a bit of a concern. Dr. Nick explained that this area could be a low grade tumor or a "hot spot" from the radiation. He felt that the next phase of treatment could eradicate this troublesome spot.

The next phase of treatment will start as soon as soon as I receive my Temodar in the mail. (Temodar is my chemotherapy drug.) For the first round of treatments I was on 75mg per meter squared which equaled 165mg each day. For the second round of chemo they are going to bump the dosage up to 200mg per meter squared which is about 2.5 times the initial dose. (Which roughly equals 412.5mg.) The big difference is that for the second round of therapy I will be on a 28 day cycle. The cycle will consist of 5 days on for every 23 days off with a M.R.I. every second treatment. This will continue for 12 to 18 treatments as tolerated by my body. So, as soon as I receive my meds I will begin the chemo and take it for 5 days. I will then stop the Temodar for 23 days and have an M.R.I. and then go back on the chemo for another 5 days and repeat again...You get the picture. This will continue for about another 2 years. (Again, as tolerated by my body and without the need for surgical or radiation intervention.) We have no idea what the side effects of such a massive amount of chemo are going to be. I can tell you from the first round of treatments that the nausea and fatigue were no fun. I would expect the same if not worse from the second round.

The chemo is the ideal situation, though. If I remain on the chemo it means that the cancer is not growing. I do have the possibility of a regrowth at any time. That is why I am getting M.R.I.'s every 2 months. Dr. Nick did say that my tumor site was approachable with surgery. If I did have a recurrence they could go back in and take out the tumor a second time. A lot of people with brain tumors can't have operations. So although the idea of chemo for 2 years sounds like a bummer, it is the best situation I could be in.

We never posted the numbers before, but GBM IV is very deadly. My initial prognosis gave me about a year to live. Believe you me, when you hear news like that it's as if someone has gut punched you. My entire world flashed before my eyes. The first thought I had was for my wife and children. I couldn't imagine leaving my wife a widow and my children fatherless. I can say that I reprioritized my life in a hurry. When you are given a year to live, it really changes the way you view your life. Now that we have gotten over the first phase, though, my chances for survival have greatly increased. Although we are not out of the woods yet, we have found a path that can lead us there. For the first time since July I can eat salad and undercooked meat again. In 3 weeks I can stop taking the steroid that makes me so irritable in the mornings. For the time being I don't have to make the trips downtown Monday through Friday. The news on Friday was very good. God is definitely good and healing. I still don't know what his plan is with me, but so far I can say that I am blessed. I feel very humbled and fortunate to have the life that I have. I will enjoy it to its fullest.

God bless all of you!

Love,

Dan and Leah