Back From Duke!

Dear All,

Well, we arrived back from Duke last night and all is well. My in-laws took great care of our kids and Leah is off driving carpool this morning. It is amazing to me how one can travel off to a different state and then in the blink of an eye go right back to normal routines. Well, enough of that.

Our visit at Duke was very good and informative. We got to meet the famous Dr. Friedman and all his wonderful staff. Our first appointment was on Monday at 12:00pm at the Neuro center. Yes, these people work right through lunch. They rotate their eating time so someone is always on duty. Also, they have a sign in the waiting room that states if you have been waiting for more than 20 minutes, tell the front desk. I was very impressed by this as I have waited in some doctor's offices for more than an hour and then no apology from anyone! We waited for maybe 10 minutes before we were called back. The first thing that was done was my vitals. They took my height, weight, blood pressure and pulse. We were then sent back out to the waiting room for maybe 5 minutes before we were called back in. This time we got to meet Dr. Friedman's personal P.A. who was fantastic! Her name is Antoinette and we went over pretty much everything. She discussed my diagnosis, which was reconfirmed. Leah and I were both hoping that maybe Florida Hospital messed up their diagnosis and I did not have GBM IV. I had to have the pathology lab at Florida Hospital send the slides of my tumor to Duke for this testing. Duke wanted 15-20 unstained slides plus, "1 H&E recut from each block and immuno slides." At the time of my surgery when my tumor was removed they did a frozen section, or a biopsy, of my tumor. Apparently they kept some on hand for further testing. This is what was sent to Duke for further analysis. Duke, in their initial letter to us, stated that they had been known to disagree with other pathology reports, so we were a little hopeful for an initial screw up. Oh well.

We then discussed the Duke plan of action for Dan Sams. They feel very strong that mixing up the chemo medications is the way to go. Dr. Friedman's opinion is that these cancer cells will eventually get used to the Temodar, (my current chemo drug) and will quit responding to it. He wants to keep the body guessing and mix up the medicines. This is a philosophy I am very familiar with. It is the same with exercise. With a weight training program your body will eventually stop producing results if you do the same program day after day. You have to mix it up and keep the body guessing as to what is going to come next. Same with cancer and chemo. Also, Duke has discovered a drug that has been used for awhile to treat other types of cancer and is showing great results with brain tumors. This drug is Avastin and works by cutting of the tumor's blood supply or essentially starving the tumor of what it needs to grow and reproduce. The only problem with Avastin is that it is not F.D.A. approved for brain tumors. This is why my local oncologist has not been able to prescribe me this treatment. Working with Dr. Friedman, my local doctor can now help me receive this drug that I need so badly.

The new chemo will be a little tougher than the Temodar. First of all, it is a true chemo in that I will have to sit in a chair for 5 or so hours every 2 weeks to receive the medications. The first medication they will introduce will be the anti-nausea, Zofran. Next will be the new chemo, called CPT-11. Then, after all of these are introduced comes the Avastin. This process will be repeated every 2 weeks with a duration of 12 weeks total. At the end of this cycle I will have another MRI and then travel back to Duke for further analysis. This whole process is scheduled to start on January 3rd after another MRI that I will have on December 31st. The MRI in December is for what they call a "clean baseline" to compare future films against. Also, the new chemo, CPT-11, is known to have some pretty nasty side affects. I won't state them here, but patients have been known to feel pretty bad for a few days after the introduction of the meds.

The general plan would then call for another chemo to be introduced for another 2 cycles with another MRI and then another trip to Duke. After that we would return to the Temodar for another cycle and so on so forth. The idea is to mix up the Temodar with the Avastin and these other 2 chemo's for a rotation of what is 3 cycles. Temodar is the first chemo, CPT-11 is the second and the third I can not remember the name of. I think it was CCNU or something like that. The Temodar calls for 28 days, (5 on with 23 off) the CPT-11 calls for 6 weeks, (1 day on for every 13 off) and the other chemo we do not know what the timeline is going to be. We will find out when we return to Duke in 12 weeks. I will start the CPT-11 with the Avastin on January 3rd and stay on this regimen for the next 12 weeks. Yee Haw!

Anyways, after speaking with Antoinette for awhile we got to meet Dr. Friedman. What a guy! He was like a bundle of lightening that stormed into our exam room. He was dressed very humbly in a pair of worn jeans and a casual cotton I-Zod type shirt with tennis shoes. No white doctors coat or anything to denote him as someone special. His hair was a little disheveled but the sparkle and intelligence in his eyes was very evident. He spoke at about a million miles per hour but was easily understood and made his points clearly. We got so caught up with him that we forgot to ask him some important questions we had. I have since sent him an e-mail and am awaiting his reply. He basically went over his reasoning for switching up the chemo's and asked me what kind of insurance I had. When I told him, he asked if I would have any problem going on 60 Minutes with him if my insurance refused to pay for the non-FDA approved drugs. He said that 60 minutes was his show of choice for stuff like this. Wow! I like this guy! Anyways, he wrapped up by asking if we had any questions, which after the 60 Minutes comment we didn't, and he left. Antoinette came in shortly after and we finished up our office visit. All in all our first day at Duke took about 3 hours and we left feeling very good and positive about the future.

The next day was not nearly as exciting but was still very informative. We met with a great social worker and a nurse. Leah and I enrolled in 2 studies, me to find the cause of GBM IV and Leah to determine the amount of stress that the caregiver goes through during this process. I was very surprised to learn that the caregiver stress level is 2-3 times that of the actual patient. If that is true we should all pray very hard for Leah over these next few months. I can't imagine that amount of stress being experienced by one individual. I know how much I feel on certain days and to think that my wife is 2-3 times that is very hard to comprehend. God bless you, Leah. I love you.

We arrived on Tuesday at 8:30am and we left around 12:30pm. We were talking with the brain tumor staff the whole time. Oh yes, I forgot to mention that day 2 took place at the Preston Robert Tisch Brain Tumor Center, which is actually in the basement of the same building we were in the day before. They are hoping to get their own building some day, which I will vouch for they need. (It was a long walk to the bathrooms from the Tumor Center.) When we left we went back to our hotel and packed and checked out. After eating lunch is was time to return the rental car and go to the airport.

I meet with my local oncologist this Friday to map out our treatment plan for the future. I am looking forward to getting under way with this new treatment. I feel positive about halting the growth of this cancer and getting back to being 100% healthy. I continue to pray for total healing and thank all of you who have stuck by my side. God bless you all!

Love,

Dan and Leah

MRI results and off to Duke

More Cruise Photos!




Dear Friends,

Dan started Chemo again yesterday and is resting comfortably as I give you all a quick update. We received his MRI films yesterday and spoke with his doctor on the phone last night. There were no visible tumors and what could be interpreted as some progression might be a side effect of steroids.

You are probably wondering if this is a good thing or a bad thing (I know we are). The truth is that we don't know right now. One of the blessings of this type of brain cancer is that it doesn't spread through the body. This also makes it hard to detect. There is no blood test that gives us any answers. The only way to confirm anything is to get tissue from the brain, and since getting a sample of brain tissue is not a good idea (unless you are already there to remove a tumor) we just can't be sure of anything. At this point time will tell.

We leave on Sunday for Duke and we are greatly comforted by your prayers for healing, pain relief, reduction of chemo side-effects, travel mercies and peace beyond all understanding.

As you can imagine, this battle for healing is evolving on a daily basis. It is incredibly important for Dan to be mentally peaceful in order to provide his body with the optimal environment for immune boosting (i.e. cancer fighting). As we complete this first week of Advent we are filled with the hope of new life. Prior to Dan's tumor we were taking many of life's blessings for granted. Today we are renewed with a sense of wonder and excitement every day. Don't get me wrong, there are days that it feels like the very air that I breath is too thin to sustain me, but those are the times that good and faithful, loving friends and family swoop in and surround us in their love. We are never alone!

Lots of love and may the blessings of this Christmas season fill you with hope,
Leah (and Dan)

Back From The Cruise...

Hey everyone! We have returned and are just getting settled back into the routine of our life and wanted to touch base with all of you. Today is Tuesday the 27th of November and I will be leaving shortly to pick up my father at the airport. He is coming in town to stay with us until Saturday and we are very excited to have him here. We had a wonderful time on the Disney cruise and Leah's folks were great to us and the kids. A big thanks to Lionel and Kathy for taking us on this cruise and for helping out so much during the voyage. I had just finished a round of chemo before we left and was not feeling 100% during the trip. Lionel and Kathy really stepped up and assisted Leah with the kids when I was down. Thanks a lot, Lionel and Kathy.

The details of our cruise were as follows; We boarded the boat mid-afternoon on Saturday and sailed around 4:30pm out of Cape Canaveral towards Key West. We arrived in the Keys on Sunday and boarded the Conch Trolley Tour and toured the largest island of the Keys, Key West. After we were done with the tour we strolled around and did some shopping. (Leah and Kathy shopped while I ate some conch fritters.) Then it was back on the boat for a full day at sea on Monday to arrive in the Grand Caymans on Tuesday morning. We boarded a tour bus and learned the history of Grand Cayman before arriving at a Sea Turtle Farm. We spent the majority of the day learning about Turtle's and other sea creatures. The kids got the attention of our tour guide early and were given special treatment during the entire tour! (Which they absolutely loved!) Ross and M.K. got to hold some Sea Turtles and then were able to snorkel with them in a special swimming area. Of all of our shore excursions I think this one was the best. We spent about half the day at the Turtle Farm before it was time to get back to the boat. From the Grand Caymans we sailed off towards Mexico. Mexico unfortunately did not work out so well. We had to catch a ferry style boat from Cozumel toward the mainland and Leah ended up getting seasick. She was O.K. once we get her back on the boat and rested up for the remainder of the day. After Mexico we had another full day at sea which was relaxing and nice. Friday was spent at Disney's private island in the Bahamas called Castaway Cay. We rented some inner tubes and rafts and spent almost the entire day in the water with the kids. Lionel and I spent the majority of the time resting on the beach in lounge chairs. It was great! Saturday morning we were at breakfast at 6:30am and off the boat by 7:45am. We arrived back in Celebration by 9:00am and we had even picked up Toby at the kennel! All in all we had a fabulous time together as a family and really enjoyed the holidays.

This week is going to be nice with my Dad here. We will use this time to get a Christmas tree and decorate with the kids. Next week I am scheduled for my M.R.I. on Thursday morning. I will also start my next round of chemo that evening. (Yee Haw!) Then we travel to Duke on Sunday for our 2 day appointment on Monday and Tuesday with Dr. Friedman at the Preston Robert Tisch Brain Tumor Center. Please continue to pray for us as we are still not out of the woods yet. We are very hopeful for some good news from Duke. We are also praying for a clean scan on Thursday morning. Thanks to everyone who has continued to pray for us and we love you all.

Sincerely and with love,

Dan and Leah

Moving Ahead

The race is over and we are starting to return to a normal state of affairs. The last of our family who flew in from out of town returned the following Tuesday after the race. We had a lot of friends and family who came for the race and we appreciated all of the support that was given. The raced turned out to be a lot of fun for all who participated. The majority of the runners did the 6.5k, but I would like to give a special congratulations to those who ran the 13k. These crazy individuals include my brother-in-law Sean Kelley, my cousin Carla Danielson, neighbors and friends Bryce Servine, Sean Kane and Emily and Ross Moore. Those who ran the 6.5k were Amy Lowell, Al Arce, Jeff Pifer, Diann Lowe, Brian and Kristin Merrill, my sister Tracey Kelley and of course my lovely wife Leah Sams. I would like to extend a special note of recognition to my wife and sister who have never run a race before in their lives and were not sure they would be able to finish this one. Leah and Tracey ran together and did a fantastic job of finishing the race! I would also like to say thank you to those who came and cheered us on. These people were Rob and Terry Zollinger, Kim Haynes, Mellissa Pifer (not able to run due to a knee injury), Caroline Kane, Kathry Arce, Will Danielson, Ashley Servine, and Eric and Erin Ericson. Thanks to everyone who came about and supported Team Dan!

Today is Monday and I have been feeling O.K. for the last few days. I start the next round of chemo this coming Thursday (the 8th) and continue for the next five days finishing the treatment on Monday. During my last chemo treatment I got a terrible head cold right on the same day I received my medication. Although I got a Z-Pack, I still had the symptoms for about 3 weeks! Unfortunately, Leah and my son Ross got the same cold a few days after I did. We were a household of joy for a few weeks! My point in telling you this is that I have no idea how the chemo is going to affect me. Everyone asks me how I feel during the chemo process. The answer is that I do not truly know yet. My friend Dion told me that he really did not feel the chemo until he was almost done with the treatment. I am suspecting, based on what Dion has told me, that I will experience the side effects sometime toward the end of day 5. What I expect are fatigue and nausea.

I see Dr. Nick this coming Friday to finalize everything for our Disney cruise and our trip to Duke in December. Apparently with the Disney cruise I am supposed to have all of my medications on me in their original containers. I do not think that Disney knows I take about 10 different medications a day that equal about 40-45 pills a day. That should be a fun bag for security to go through! For Duke I am supposed to gather a lot of medical information that only Dr. Nick and a lab out in California called OncoTech have. Apparently Dr. Freidman and his staff want to look at the original frozen section of my tumor that was taken during the surgery. I also had to fill out a lot of paper work for my medical work up. This was all done via e-mail, thank God! (I received about 10 different forms that were a few pages each!)

As we approach the date for the cruise we are growing very excited. I am looking forward to some quality time with my family that I feel I missed on our original cruise. During our first Disney cruise I was not right in the head due to the tumor. I was sleeping a lot, and when I was awake I was not myself. (Little did we know at the time that I had a golf ball growing in my brain.) Some quality time with Leah and the kids and my in-laws is much needed at this point in my life. I still thank the Lord every day for answered prayers and continue to pray for total healing. I know what has happened so far could not have happened without His help and guidance. Thanks to all of you who still pray and think about us. We love you and look forward to hearing from you soon!

Love,

Dan and Leah

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

GOOD NEWS!!!

Hooray! We just received a call from Vanessa (Dr. Nick's nurse and our earthly angel), and Dan's scan looks good! Both the radiologist and Dan's neuro oncologist agreed that on preliminary readings things are looking good for us. PRAISE GOD!

We had just composed a joint email asking for prayers for peace and patience when the phone rang (5:20 PM). Our wonderful medical team stayed on late to give us this news! This means that the chemo and radiation have been effective in retarding (if not stopping) the growth of Dan's cancer. Any time that we have together is precious, but this gives us a real chance to take a deep breath and not think about cancer for at least a few weeks.

We will meet with Dan's doctor tomorrow to discuss our next phase of treatment. We know that he will receive chemo on a 23 days off, 5 days on schedule, but we think that he will not need the gamma knife treatment at this time!!!

This is such exciting news for us. Of course, this is the end of phase I, but for now we can tally the score as Cancer-0, Dan-1! Thank you prayer warriors and support team. We know this is going to be a long fight, but it sure feels good to be on the winning side for now. We are offering up huge prayers of praise and thanksgiving!

Lots of love,

Leah and Dan

Monday In Beautiful North Carolina

Hello everyone! It seems like a long time since our last update. We are now in the gorgeous mountains of Highlands, North Carolina. Highlands is located just above the town of Cashiers about two hours outside of Atlanta, Georgia. As I write this message the weather outside is close to the 50's and DRY! During the day it never exceeds 75 degrees. It feels incredible up here. (Too bad we have to come home on Wednesday.)



The kids, Leah and her parents and I are having a wonderful time. We have hiked up Whiteside Mountain, had a picnic lunch up on Sunset Rock and gone trout fishing with Grand Daddy. (M.K. and Ross have each caught 2 fish! We will post the pictures once we get back home.) I am actually sleeping in for the first time in a while. I still wake up early but I am able to go back to sleep up here. (Must be the lack of responsibility and chores that I have at home.)



My last radiation treatment was on Thursday morning at 7:30am. We promptly hit the road and arrived in Buckhead around 4:00pm later that day. We stayed at the InterContinental Hotel and had a wonderful dinner at the french restaurant located in the lobby. The next morning we slept in and had breakfast at the Concierge's Lounge before proceeding on to North Carolina. The trip from Buckhead to Highlands only took about 2 hours and we got to have lunch with our children and Leah's parents at the Wildcat Cliffs Country Club.



As I said before, our time up here has been amazing. I truly feel as though I am able to rest and heal. When I get back my M.R.I. is scheduled for Thursday morning at 6:30am at Celebration Health. They tell me I should be able to get the results back by the end of that day. I am going to ask for my own set of films just to see if I can see anything. If there are "hot spots" in my brain they will show up as white spots on the x-rays. Hopefully I will not see any of those. I am also going to be sending this second set of films to a Dr. Friedman up at Duke University. This is the gentleman who is associated with the Tug McGraw foundation. He is considered the top brain tumor Oncologist in all the world.



I have been signed up for the Gamma Knife procedure in case the M.R.I. shows something. Apparently most patients in my situation have to undergo this secondary procedure to erase as much doubt as possible concerning the eradication of the tumor. The Gamma Knife is very precise pinpoint radiation that targets the cells on a microscopic level. It is supposed to be VERY intense from what I hear. I will be fitted for a new mask that will be tighter than the first one. (I was sent home with my first mask after my last treatment. Graduation gift?) The thought of being refitted for a new mask is a little frightening. Remember the scene in Alien when the man is attacked by the egg laying parasite? That is the mental picture in my head concerning the fitting of the mask.



Y'all are probably wondering how I am feeling. I am surprised at the level of energy I have been able to maintain. All of the personal testimony I heard from those who have been here before, (even the same doctors and the same protocol) say that the last 2 weeks are very rough. I was even told to expect side effects from the radiation for up to 6 weeks after the treatments end! (Radiation side effects include but are not limited to loss of smell, loss of taste , loss of hair, fatigue, headaches, etc...The radiation basically fries everything.) Although I have experienced some mild appetite loss, (I have lost a total of 10 pounds since I came out of the hospital) and taken a few naps, the only real problem I've had are the headaches. The headaches are nowhere near as intense as they were before, though. The only fear I have concerning the headaches is that the tumor is back. I am told that what I am feeling is my brain swelling from the radiation. It is sometimes hard to ignore the fact that my head is still hurting like it is, though. These headaches I suffer toward the end of the day are in the exact same location as before. Besides the headaches, though, I am feeling really good. My appetite is still a bit off and I do suffer the occasional fatigue, but for someone in my situation I think I'm doing great! The refreshing mountain air and the time with my family has been wonderful.



Leah and I are still praying for total healing. We are very hopeful going into this M.R.I. and feel confidant that the results will be good. We miss all of you very much and look forward to seeing you again. As far as the backyard play gym, all I have left is the porch roof. Thank you so much to Jimmy for helping as much as he did during the last day. Thanks to Eric as well for helping complete the set during the week. Everyone has been so wonderful to us during this time and we appreciate all everyone has done. Thank you!



With love and blessings,



Dan and Leah

2 Days 2 Go!!!

We now have a slide!!!

The perfect rainbow (taken from our front porch).






We are still missing the swings (we are on step 75 out of 99).


I can hardly believe that we are 2 radiation treatments away from the end! Dan and I will not know what to do with ourselves without that trip to the cancer center each day. If you have to get radiation, the Cancer Institute is a wonderful place to go. The staff treat us like family and we have grown very fond of the patients who share our general appointment time. The doctors are more like buddies than anything else. It is fun to sit and visit with other cancer patients and their caregivers. We all get excited when someone "graduates" from treatment, or gets a port removed, or gets their radiation dose lessened. I have to say that if you want to hang out with some pretty remarkable people, hang out at a cancer treatment facility. Most of the people you meet will have their priorities in order (or they are actively looking for a way to do it).

Danny is out in the yard working on the playground with his friend, Erec, as I compose this blog. I just took a couple of photos that I will add. This playground will be better built than our house. The directions say that it takes 2 moderately skilled individuals to put it together. The directions fail to mention that the 2 moderately skilled individuals will be master craftsmen by the time that the project is completed. Tomorrow we will get in a 13 foot magnolia to try to block the mega playhouse from street view.

As you can tell from our playground, Danny doesn't do anything by halves. He attacks every project (including his cancer) head on. Dan is pushing through these last few days of treatment with the same intensity. He has had to take some afternoon naps, but all in all he is astoundingly tough. I know that he is looking forward to some real rest and healing over the weekend. Our prayers for this weekend are specifically for the chemo and radiation to have been effective and for God to use Dan's body at a cellular level to destroy any of the cancer that may have been left behind.

Thank you for your prayers for travel mercies. Danny's parents made it safely to Odessa, and my parents and our children arrived in Highlands this morning without a hitch. Danny and I will head up the road on Thursday following his "graduation" from radiation.

Dan and I have spent our time together (without children) discussing the many blessings in our lives. We are so appreciative of all of you. It has been humbling, to say the least, to see your posts each day. There have been many early morning hours that were warmed by the gift of your written words. We even go back to the beginning and re-read your messages on really hard days. Thank you.

Lots of love,
Leah

P.S. It is now 9:30 PM and construction crew #2 has arrived! ("Thank you," Erec & Jimmy)~L

The Home Stretch

"Thank you," Tim, Shel, Roger, Jimmy and Mark for working ALL day on phase I of the playground--what a great job!

Dan and his buddies spent the entire day building a playground for our children. I am so appreciative!!! The playground is wonderful. It is located right outside of my kitchen and living room windows where I can watch the children play while I "work" inside the house.

I know this was a HUGE sacrifice for the men involved as well as their families. As a wife and mother I realize what a gift of time they all gave---Thank you!

This was a wonderful week. Dan's parents came in from Texas and brought a great big dose of energy with them. As usual, my mother-in-law has been cooking, cleaning and generally nurturing up a storm. She has not only made meals for us, but for some of our friends as well (can you believe it?!?). Susie is a real miracle. She is a cancer survivor herself! Bob, Danny's dad and best buddy, has been a loving and peaceful presence in our home. We are really blessed to have them as parents.

I hope to fill you in with an update again on Monday. That is when we anticipate the completion of our playground. It is also the day that the children leave for N.C. with my wonderful parents for a little holiday while Dan finishes up his first round of radiation (on Thursday). Susie and Bob will be headed back to Texas on Monday as well. We are asking for prayers for travel mercies for our whole family on that day. As always, we appreciate any prayers offered up for total healing for my dear Danny.

As we near the end of the active treatment, the anticipation of Dan's next MRI is beginning to increase. This is a BIG deal. It will be the determining factor in our next phase of treatment. Ideally, there will be no cancer/tumor growth on the films. If so, then he will progress to the 23 days off treatment followed by 5 days of intense chemo and radiation schedule. If the cancer is back, then we will hit it with the big guns.

What ever the MRI shows, we are OK. We trust that God loves us and we trust that his perfect plan surpasses our limited understanding. We praise God for his many gifts, especially for this time that we have today.

Lots of love,
Leah (and Dan)

1 WEEK TO GO!

Hello everyone! Today is a beautiful day! I am sitting in my office right now with a cup of coffee in front of me and the house is completely quiet. This is a good time for me to catch up with all of you. My folks are in town this week which has been a wonderful blessing. We went to Sam's club yesterday and waited for over an hour for the staff to bring us a backyard play set for the children that we are going to build on Saturday morning. Besides that being the most painful test of my patience everything is going well.

On the last day of my treatment the Cancer Center has moved my radiation to 7:30 in the morning. Any driving volunteers? Just kidding, we are actually going to that session packed up and ready to go to North Carolina for the week. My wonderful In-Laws are arriving at our house on Sunday of this weekend to take our gorgeous children up to the mountain on Monday morning. We will be childless all week! I am not sure what we will do with ourselves but I bet we can come up with something. The last day of treatment my Father-In-Law has reserved a room in Atlanta in a very fancy hotel. We are so excited! We can't wait to have a night to ourselves in a high end hotel in downtown Atlanta. Thank you Lionel, thank you Kathy.

As far as the radiation and chemo goes, I was told by some very reliable people (the last two folks I wrote about) who had gone through my exact same treatment to expect to feel really lousy the last two weeks. I'm just not there yet. I ate four meals yesterday! I have only lost about 8 pounds since this has all started! Don't get me wrong, I still get bad headaches and fatigue in the afternoon, some days I don't feel like eating very much at all, but overall I think I'm doing really well. My blood work for my immune system has come back good from the beginning. (Thanks to Dion for the holistic medicine recommendation.) Does that mean I'm due for a delayed reaction? I have no idea. If I do get wiped out it will hopefully happen while I'm recovering in God's country, the beautiful mountains of North Carolina. That reminds me, I have not been to the North Carolina in over 6 years. I had been so busy at work I could not take time off to be with my family in the mountains. That is just another reminder of how messed up my priorities were before my diagnosis.

If y'all have been looking at the guestbook you have probably noticed an outpouring of my fraternity brothers from college. I would like to commend my Brothers from my chapter and say thank you for being so awesome! I even met a friend of a brother who is going through a very similar experience that I am. He is located up in New York and is receiving treatment at Sloan Kettering which is one of the three top brain tumor centers in the U.S. I would like to add him to our prayer list, he has a family and his name is Matt. Please specifically pray for his total healing and that his treatments are good to him. If all I got from the contact with the brothers was the ability to reach out to one individual, that would be great. That is not all I got, though. My brotherhood is an amazing group of men. This has been a reminder to me of why I joined a fraternity; a lifetime of friends and love. My spirits were a little down when the brotherhood contacted me. I felt lifted up and cared for. The way it happened was a bit bizarre. I bumped into on of my brothers at an Indian Princess's sign up. After we met, within literally 3 days, I received almost a dozen posts from the brothers. I do have to publicly thank Jimbo for posting a link to our alumni website and sending out the e-mail that made the brothers aware of my situation. Jimbo, thank you very much.

Well, the kids are about to wake up and get ready for school so it is time for me to sign off. I can't wait to get to the mountains and see God's work first hand. I know it will be a wonderful place for me to heal and feel His presence. I love all of you and thank you again for you continued love and support. God Bless!

Dan and Leah

P.S.- I just got the best snuggle from my son as he came down to say good morning. God Bless the little ones!

4 Weeks Down, 2 To Go!!!

Dan and Ross building a model airplane--(Thank you for the materials and idea, Jeff!)



The kids in their "Team Dan" gear

Friends and Family,

It seems like every one of my posts starts off with an apology, so I will I try to avoid that here. We have had a tough week this last time around. Nearing the end of my treatments has become difficult. I was told that the chemo and radiation have a cumulative effect on the body. Boy, whoever said that was right. Apparently every 5th radiation treatment, (after my brain gets a double dose from the mapping) the amount of radiation is increased. As of this coming Friday I will be at my highest dose of radiation ever. If you look closely at my head I have a tan line from the treatments. I also have a radiation burn on my forehead which tends to look pretty crispy by the time Friday rolls around. At first I thought it was really lousy that Florida Hospital would take the weekends off from treatments. Now I see the need for it!

I broke down for the first time on Thursday of last week. I woke up that day at 2:30 in the morning and could not go back to sleep. I know many of you suffer from the same problem I sometimes get. I call it racing brain. I wake up at some ridiculous hour in the early a.m. and my brain just starts going a 1,000 miles per hour. Try slowing that train down! The bizarre part is that my body and mind are not tired at that point in the morning. It is not until the time I need to be productive that I get tired. (Figures, right?) I missed taking the kids to school so I could attempt a few more hours of sleep. When Leah returned we started to talk and it just poured out. I have not let go like that since all this began back in early July. When I was initially given the news of my diagnosis my mother and Leah were both there with me. I felt I had to remain strong for them. When I eventually sat down with my counselors I felt I had to remain strong for him/her. (All this male macho crap was taking a toll on me.) I would have moments of tearing up when I read some of your posts, but this was Niagra Falls. I felt like a little baby. I don't know why I shared that with you, I just felt I needed to. The Lord is sometimes speaking to me in strange ways, I feel as though this is one of those times.

The children and Leah all seem to be doing well. I am doing more than I ever have with my family which is VERY nice. Last week I took the kids to school all but one day. I have become involved in after school activities which is very cool. Monday Ross and I start t-ball practice and on Saturday Mary Kathryn and I signed up for Indian Princesses. I am going to use this time that God has given me to the best of my abilities. I have felt like the absent father for all of my daughter and son's life. I know it is time to get involved.

It is amazing the support group of family and friends that we have. We are never lacking for food, rides, fellowship, babysitters, play dates, etc. All of y'all are amazing people and we love you. Tomorrow both of my parents arrive for the whole week. Leah and the kids and I can't wait to see them! My mother tends to come in and take over and we let her. It's awesome!

I once again feel very blessed with my current circumstance. I know that sounds crazy but it is true. I don't think anything short of a malignant brain tumor would have changed me so much. The hardest part will be the waiting at the end of my treatments. I will not have a conclusive MRI until two weeks after my last radiation treatment. The reason for this is apparently I will have "hot spots" from the radiation in my brain for awhile after the treatments are over. Oh well.

Thanks to everyone again for your love and support. We need it and love it and miss every one of you. Thank you so much for being there for us. You make us feel special. Thank the Lord for his blessing's and love upon all of us. I pray daily for all of you and for all of us.

Sincerely, with love,

Dan and Leah

Hello! A Special Homecoming

This is a photo of Dan coming home from the hospital.


To All,

I would like to start by thanking all of those who have once again been so helpful to Leah and I. We have had several people help out with drives down to treatments, meals, and carpool for the kids. We also would like to thank all of those who are praying for us. I truly feel as if I am in Gods hands now. I sometimes feel lousy from the side effects of the chemo and radiation, but besides that, I feel really good. I don't know what brain cancer is supposed to be like, but I feel better than I did before my diagnosis.

I have to tell y 'all that my surgeon is a complete stud. All the research I have done puts a huge part of my final outcome at the hands of the surgeon. (I have been doing a lot of research over the past few days.) The complete and successful extraction of the tumor is incredibly important for the survival of a patient with GBM IV. I have seen and read the films (MRI and CT scans of my brain pre and post op, that means before and after surgery for you non-medical lingo types) to the best of my ability, (which is actually pretty good because of my medical career) and the tumor looks to be completely gone. I never experienced any of the potentially disabling side effects from the surgery. I have read a lot of testimonies from other patients in my same circumstance and they all seemed to have a rough experience of some sort or another. (Multiple surgeries, bad side effects from surgery, infections, etc.) My road so far has been a very smooth one.

The months leading up to my diagnosis were not pleasant. Back in early February I started having what I thought were panic attacks. I saw a doctor for it who prescribed Xaniax for me. Unfortunately, the Xaniax probably masked a lot of my symptoms from the tumor. (The area where my tumor was growing affected anxiety, moods and emotions.) After a period of time I began to see a counselor for my emotional detachment at home due to what I thought was stress associated with work. The stress at work was and is real, (ask anyone in our industry and they will tell you) but it was not causing my lack of emotions. That again was apparently the growth of the tumor. It was not until I started having the devastating headaches that we knew anything was truly wrong. The final straw was a headache that lasted for 3 days and would not go away. The day I checked into the Celebration ER I could tell that the Doc there did not really believe me. It took a CAT scan which showed the golf ball sized tumor to convince him that I was telling the truth! That night we were checked into the ICU at Celebration Health and had a MRI for the final determination of the tumor. (The MRI was for final diagnosis and size and location, which ended up being 5cm and frontal left lobe.) We were told Sunday evening around 11:30pm that I would be having emergent surgery for my tumor by the neurosurgeon who was on call that night. The day of surgery would be Tuesday because the surgeon needed 24 hours to reduce the swelling in my brain and to get me ready for the procedure. (Cardiac clearance, surgery work up, etc.) Leah and I both were trying to seek a second opinion and were told by the hospital that there was no time. If I did not have the surgery on Tuesday I would be dead within 24-48 hours because of the tumor rupturing in my brain. (Apparently the rupture of the tumor is what caused my final headache that settled in for 3 days.) Luckily I had found out by 9:30am on Monday morning that I was in VERY good hands. My surgeon was considered the BEST neurosurgeon in all of central Florida. (Celebration Hospital had hired him to elevate their status in their neuro department.) I have since given him a much higher status as the best surgeon PERIOD! I was bumped to the first case on Tuesday morning and prepped for surgery. Part of the prep was being told that I may wake up to partial paralysis on the right side of my body and limited or no ability for speech. Great! That was uplifting to hear. At this point I asked God to please watch over me and my family and to not make me a vegetable during the surgery. Actually, what I really prayed for was healing and to provide for my family and to please guide my surgeon's hand.

I remember nothing of the surgery except waking up in recovery and being very disoriented. Leah was there and I reached for her hand with my right side and pulled her down to whisper in her ear. I initially thought that my surgery had been aborted as I was being put to sleep. It took me awhile to figure out that the tumor had been removed and I was still in Celebration Hospital. (I had some sort of dream that I was transported to another hospital and then had a bad reaction to the anesthetic and was not operated on.) It startled Leah that I was able to grab her hand and talk to her. Then I was telling her that they didn't get the tumor and some other gibberish that she did not understand. As I was transported back to my room, I realized that I was still in Celebration Health and then I saw the "turban" bandage on my head and had a feeling that the surgery was a success. It was a still few hours until I came to the full realization that the tumor was removed and everything had gone well. It would not be until the following Thursday that I would be given the full diagnosis. Apparently, poor Leah knew the day of my surgery what we were up against. For right or wrong my surgeon had instructed her not to tell me until I asked. I was on some good pain medication for a long time and never thought to ask anyone until I saw my surgeon for my post-op up check up. That was when I was given the tough news about the cancer. I was told that I had to wait for about 4 weeks for the swelling to go down from the surgery before they could start my treatments. I was concerned that during that time the cancer cells would grow and start to infiltrate my brain. My concerns were not justified, just me being a bit paranoid.

I have come to terms with my cancer since all this has started. Once you are faced with your own mortality your life takes on a whole new meaning. I have finally fully committed myself to our Lord. I have put my life in His hands. As I have shared with y'all earlier, I feel His hand in my life in almost all that I do now. It feels divine and scary all at the same time. I sometimes don't feel worthy. I still pray every day for guidance and help. I still pray for others who are in need.

I thank all of you for everything. Thank you so much. We love you.

Sincerely,

Dan and Leah

These are pictures of the kids on their first day of school. Ross is with Danny and Mary Kathryn is with her wonderful new teacher!

Update On Tower Zone Race / Divine Intervention Pt. 2

To The Runners,

I just got off the phone with Disney and the news is good. Anyone interested in running the Tower Zone Race on October 27 has two options; you must register for the 13k. At that point you can either run the 6.5k or the 13k. The way it will work is the race will have a u-turn for the 6.5k that will take those runners (including me) back towards MGM Studios. Those who wish to test themselves (and get their heads examined, Roger, Carla) can keep going and finish the 13k. Those of us who are sane will be back at the party drinking a cold one and waiting for those who decide to run the half marathon. The only catch is that you must pay the $65 dollars for the 13k. Disney will not reimburse the $25 dollar difference. For those who are interested I have set up a block of rooms at the Celebration hotel. (407-566-6000) What is normally a $200 dollar room they are going to give to us for $160. The tax rates etc. will all be lower as well. All you have to tell them is that you are member of the Sams Party. At this point I would recommend that if you are considering running the race go ahead and register before the race fills up. I look forward to seeing all of you there.

Now to all family and friends,

I had promised another story of divine intervention. Here it goes. Early on in my treatments my brother-in-law, Lionel, had sent me an e-mail concerning a gal in Tampa who had been diagnosed with GBM IV 2 years prior. The E-mail included this girls name and number. I looked at the name and thought that I recognized it but was not sure. I called her up and we immediately began talking about her diagnosis and treatment. (It's funny how those of us with this disease skip the pleasantries and get right down to business.) After listening to her for 5 minutes I stopped her and asked where she had grown up. She immediately asked me, "Is this Danny Sams?" It turns out that she and I had grown up together as kids. This was a very close friend of mine when I was younger. We went to summer tennis camp together and lived in the same neighborhood. We used to be fierce competitors on the tennis courts. When I was able to I used to ride my bike over to her house to hang out. Talking to her now and knowing what she was going through blew me away. I could not beleive that this girl I had grown up with and I share the same prognosis. And to know that she is 2 years out and doing great! She is a true inspiration to me and keeps my spirits up on days when I get to feeling down. I still thank Jesus for putting these people in my life. If there was ever doubt about this being a God thing it was gone.

Anyway, time for me to go and get ready for my treatment. Love to all of you!

Dan

I'M BALD!!!

Hello all! Well, as the title states, I am bald. Last Wednesday my head started to really itch. I began scratching my head in earnest and then realized a large area was losing hair! The spot in question was where I receive the majority of my radiation. I get hit with five blasts of radiation that focus on the area where my tumor was. (This area is left frontal lobe.) I had always said that when I lost a little, all of my hair was going. As soon as I was able, I had Leah shave the rest of my head to even things out. (Take a look at the pictures.)

I know that I had promised what I consider to be stories of God's hand at work. Here is one for you. When I had my initial consult with Dr. S, (who is my radiation oncologist) the first thing he said to me was, "Could you have picked a worse tumor?" Now, imagine my reaction. This is the man who is going to be in charge of my radiation therapy for the rest of my life. He already sounds defeated. I am not liking his attitude. I am sure he saw the look of anger start to cross my face because he immediately states, "...but I've got a patient who is living in Texas who is 6 years out and doing great! He is a lot like you. Young, energetic, triathlete, positive attitude, hope, etc." Now, all that is true except for the triathlete part. I ask Dr. S to go on and he says that this individual had the same tumor I did, received the same treatments I am about to start, and is now 6 years out and very healthy and active. Wow! Great news! I almost forgave him for asking me the question about "choosing" my tumor.

Well, 2 days go by and I see a post on our guestbook from someone who identifies himself as a, "brother in brain cancer survivorship." He goes on to explain who he is, what he is doing, and oh, if I would like to contact him, here is his e-mail. I couldn't believe it! This was the same gentleman that Dr. S was telling me about a few days before! I fired off an e-mail right away and at the end ask him how he, in Texas, heard about me and our website. (I initially thought that Dr. S had contacted him and asked him to contact me.) On his reply, said gentleman informs me that his sister knows a girl who knew my cousin at Ohio University. Holy smokes! Talk about the hand of God! Not only is it totally cool that I get in touch with a 6 year survivor, but he also recommended several alternative medicines that I am currently taking that are probably the reason my immune system is doing so well. This individual is the main reason I signed up for the Tower Zone Race. He convinced me to have a focus and goal in mind during my treatments so I did not get down and out. I have had several phone conversations with this friend and have really enjoyed his upbeat attitude and spirit. As a matter of fact, he and his family are coming in town on October 18th and staying on Disney property. (He is coming back for his annual MRI with Dr. Nick and Dr. S.) We plan on getting together and comparing our scars. (Just kidding.)

This whole story really gave me the goosebumps. When I post next time I will share another story that is equally incredible. Praise Jesus, I see his work every where I look now.

As for me, all is going as expected. My side effects are present but manageable with medication. Being half way there is a big blessing. I want to thank everyone again who have helped us out in so many different ways. We are still receiving several meals a week which has been great. I even had some very good friends steal my truck on Sunday and detail it! I have had several people drive me down to my treatments so the burden is taken off of Leah. All in all, everyone has been truly wonderful during this time and I thank all of you. Those of you who keep signing the guestbook, we love your comments. Keep them coming.

As for the race, I contacted Disney a week ago and still have not heard back. I called several times today and got nothing but voicemail. I did find out that the 13k and 6.5k start at the same time in the same location. The 6.5k just stops at a halfway mark. If I can't get Disney to respond, my thoughts are that we will just begin the party a little bit sooner. Is everyone good with that?

Well, I am going to sign off for the night. God bless all of you and we love you.

Thanks again.

Dan and Leah

1/2 Way There!

Dear Friends,

This week will mark the middle of Dan's chemo/radiation regimen. I feel like this is a crucial point for reflection and prayer. We have been enveloped in wonderful fellowship over the last three weeks. It has been such a blessing to our whole family.

I have been taken aback by the strength of Dan's treatments. Of course, we want to annihilate this cancer! We are praying for the chemo to target the cancer cells and for Dan's healthy cells to remain so. We are praying for the radiation to be pinpoint and precise (sparing the healthy brain and destroying the cancer).

Sunday is my favorite day of the week. We focus on our family in order to strengthen ourselves for the week ahead. It is a day of rest! The chemo is 7 days a week, but the radiation is only 5...believe me when I say that a body couldn't take more than 5 days without a rest. I am praying that this weekend allows Danny to heal and rejuvenate in order to face the battle again on Monday.

The radiation only takes about 10 minutes (except for Wednesday which is about doubled for mapping purposes). Dan goes into the "vault" at 11:45 and is usually out by noon. If God puts it on your heart to do so, this would be an awesome time to ask God to really direct the treatment efforts and to strengthen and protect Dan.

Thank you all so much for your posts, cards, phone calls, meals, outings and prayers. Thank you for opening your hearts, cupboards and homes to us. As we face the week ahead it is impossible not to be anxious over the possible side-effects, but we do not have hearts of fear, and we lay our worries down at the feet of Jesus. We are able to see the power of God in the perfection of his plan, the strength of Jesus in the sacrificial love of our friends, and the peace of the Holy Spirit filling us and preparing us to enjoy each day as it comes.

Happy Sunday!
Leah

The Race Is On...

(Make sure to look at the comments area at the bottom for future race updates. A link to this thread appears on the right side of the page under LINKS.)

Hello! Some of you have already heard the good news. Disney is having a race on October 27th for the Leukemia and Lymphoma Society. The race starts at 9:00pm and has a party afterwards with access to a few rides at MGM Studios. (Click here to register for the race.) I contacted the Tug McGraw Foundation last week and asked if I could raise money for their foundation. (The Tug Mcgraw Foundation is a Glioblastoma IV specific foundation based out of Duke University. Check out the link for more info.) They were delighted! They even went so far as to offer sponsoring me for the race! So far several of my family and friends have signed up for the race. (Unfortunately right now the only race available is the 13k but i am attempting to get us in the 6.5k.) Duke University is one of the three best brain tumor centers in the U.S. A lot of incredible and groundbreaking research is being done there. Thank and God bless all of you.

I have started my third week of treatments and so far so good. I am experiencing some mild side effects but all is manageable with proper medication. (Sometimes drugs really are a God send.) We have had a solid week of family in town which has been a lot of fun. Our house feels somewhat empty after all of the adults and children have gone. Thanks to all who continue to keep touch and stop by and drop off food, etc. Your generosity has been wonderful. I know I promised some stories about divine intervention but with the race info that will have to wait until my next posting. (This one would have been done sooner except Comcast was down all day yesterday. Sorry)

Once again God bless you all and please keep praying for total healing! We love you!

Dan and Leah

<Team Dan gear now available!
(Dan mentioned that he was going to do a shirt for the race so I put one together for him. Once I found a site that could print shirts on demand I just added a bunch of their other items. This is just for fun and is not a fund-raiser of any kind.
- Lionel)

Sorry For The Delay...

Dear Friends and Family,

I am sorry that it has been so long since my last post. We have been very busy recently. I have had people ask me what I do with my days now that I am not working as much. Just for the record, I am still doing some consulting and office work on a part time basis. I do plan on going back to work for Stryker once I get this cancer in remission. Even without my work, though, Leah and I have had a lot of family at the house lately. If you know about my family, they are all from out of town. (the exception being my Grandmother who lives in Sun City and is not able to come to Celebration, so we go to see her) When they are here for a visit, they stay with us in our apartment. For example, last Saturday my aunt, cousin and cousin's wife and children all came for a visit. My sister and brother-in-law and their 2 children arrived a little bit later. (see photo) My aunt and cousin left around 4:00pm and my sister and her husband are here at the house until early Thursday morning. My brother and his wife will be coming in the following Friday for the weekend. We also have planned visits from my old college roommates, and other cousins and assorted family members. Please, do not misunderstand. We LOVE the attention. I am just trying to make excuses for my laziness.

O.K. The first week of treatments are over and done with. All things said and done, they went well. The only problem I have had so far was and is the chemo and my head. If my anti-nausea meds were off, I feel the chemo in a bad way. I don't feel like I am going to vomit, I just feel bad. My head is a bit strange. I do not have the headaches like before, but my head still has moments when it hurts. (usually toward the end of the day) The pain, I think, is still from the surgery. All I can is thank God for good meds!!

I have begun my second week of treatments and all is good so far. I had blood work done on Monday and I met with my radiation Oncologist. The blood work is to determine what the levels of my anti-seizure meds are (I haven't had a seizure, this is just preventative)and also to check my white cell count as well as my platelet levels. Radiation is going smoothly. I get to play my own music during the treatment. Thanks to my brother-in-law, Sean, I have 6 great CD's to choose from. (I am currently listening to a live Widespread Panic CD)

Thanks to everyone again for all your prayers and support. The next time I post I will share a story of the Lord's hand doing incredible things for me and Leah. I could not imagine going through this experience without believing in God and his son Jesus. I have had so many divine experiences that one would not be able to explain by coincidence. To walk this journey without faith would be a very lonely walk.

Love and prayers to all!

Thank you,

Dan and Leah

Dan's Daily Dose...

Thank you Thursday--again!

Dear Friends,

Dan and I are simply in awe by the outpouring of love, support and nurture that we have received this week. We haven't had one need that has not been met. Our children have not had one hour that they weren't in loving care. Our bodies have not had one day without nourishing food lovingly prepared. Our needs for fellowship have always been met. God has not left us and neither have you. Thank you.

This has been a busy, topsy-turvy week for us. I think that we will hit our stride soon. The only thing that we have come to expect is the unexpected.

Wednesday was Dan's first day of full treatment. He is doing well, but we were both a bit surprised by the strength of the medicine. I guess it was a bit naive to think that this would be a walk in the park. We were kind of thinking that it would take a few days/weeks to "feel" the effects of the chemo and radiation. Not so. It is POWERFUL medicine.

Dan seems to be managing his medication a little better today. There is a large learning curve with all of this. In fact, we sat down with our patient education coordination nurse today (try to say that fast). She gave us a lot of practical help and information.

Dan was able to smell the ozone as the radiation was being administered today and see the "lights" in the radiation machine (apparently not all patients can do this--we are assuming this is good?!?). The tech seemed a bit surprised that Dan could do this. Any info out there?

As I sign off for the night, I leave you with this comment from a new friend, a 6-year-survivor of the same grade/level tumor, "the treatment is needed to give you an edge, but God's miracle (you) is the only thing that can beat [your cancer]."

Thank you, again,
Leah (and Dan)

After The First Treatment...

Hello to all! Thanks again for reading this blog and signing the guest book. We love reading your posts. The last few days have been amazing! Leah and I spent quality time with our children and we have had some great visits with friends. I actually got into the gym yesterday and today! (If any of my Doctors are reading this, please ignore that last sentence) Thanks to all who have brought us snacks, desserts and dinners. I am told the last 2 weeks of chemo are going to be difficult. Apparently my taste buds won't work from the radiation. Weight loss seems to be inevitable and fatigue will take over. Long story short, all the great food being delivered is much appreciated!

I had my first treatment today. I took my anti-nausea medication at noon and then the Temodar (chemo) at 1:00pm. My radiation was scheduled for 2:00pm so we left the house around 1:15pm. Upon arrival at the Florida Hospital Cancer Center we were taken into the back and shown the room were I will be receiving my radiation treatments. (take a look at the picture) I was informed by the technician that today would be a "dry run" were they would map my brain and make sure the markers on the mask were in the right spots. I would not receive any radiation. I laid down on the table and my mask was bolted over my face. (I had a moment of panic as the mask was secured in place) The technicians then left the room and the machine came to life. It started humming and twirling and lights were flashing. I felt like I was in a 1970's disco club. It was at this point that I decided If I did not close my eyes I was going to get sick. (I use the same technique with MRI machines. Just close the eyes...) I became so comfortable that I started to fall asleep! Right as I was about to drift off the techs came back in and snapped off my mask. This whole process took only 15 minutes. Apparently this is the same duration of time the actual radiation will take. We then met up with Dr. S's nurse and went over a few questions we had about the remainder of the week. The schedule for the next 3 days will be as follows; Wednesday is 2:00pm, Thursday is 2:30pm and Friday is 3:00pm.

We ask for your continued prayers and support. Once again, the next 3 to 4 weeks are still good for visits. My last 2 to 3 weeks of treatments are not supposed to be a walk in the park. Feel free to call or leave a message on this site. God bless all of you.

Love,

Dan (and Leah)