PET Scan 5/18/2016

Thank you for all of your messages and notes. It’s been busy here lately so I sincerely apologize for the lapse in Facebook posts. I know you’ll say it’s okay, but from my point of view, I built this platform surrounding our journey to always make sure I treat you all like dear family. It’s important to me, and I think about all of you often.

We had an absolutely amazing weekend celebrating our two amazing boys birthdays. Thank you so much to all who came out to their dual birthday party. They had so much fun at the amazing shark themed party that somehow my incredible wife put together all on her own. She is truly an angel! I am a blessed husband and father.

I apologize for the short notice, but if you have a few seconds to spare, please pray for amazing PET scan results this morning. The scan prep began at 830am.

Please pray for a fight we can win. Please pray that God’s mercy keeps us as a humble family of four for many, many years to come on this beautiful planet.

Just to clarify, we have been fighting this disease in two different fronts for some time now. Unfortunately, we’ve only had to deal with one or the other at any moment on this journey.

In other words, we have to deal with it in my central nervous system (brain) as well as systemic (lungs). MRIs are follow-ups in the brain to restage my progress. PET scans are follow-ups in the rest of the body.

We live but one day at a time. By diligently adhering to this often forgotten philosophy, I have enjoyed this beautiful life, every single day, what will be 7 years this August. God is great, and it is amazing amount of years against this disease.

I’ll keep fighting with all that I have as long as we have you all on this journey with us picking us up when life tries to tear us down.

We fight on. Forever.

We love you all so very much. Thank you, each and every single one of you, for taking the time to love us, share our story, learn from our journey, and for living your lives.

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Treatment Tomorrow (Weds)

A very good and beautiful morning to all of you!! Thank you for all of the warm and heartfelt messages you always send but especially with my most recent update about gammaknife #5.

The last 24 hours have been chaotic and a whirlwind, and I had no part in causing it!

Yesterday morning, I had all travel and accommodations planned for gammaknife this Wednesday until the radiology team called to inform me that there was no availability this week. They weren’t sure why neurosurgery gave me the wrong date. They scheduled it for next Wednesday, May 11. I cancelled and rescheduled all of my plans for the following week.

Fast forward to 6pm yesterday, I get a phone call from radiology that there was a cancellation this Wednesday. They questioned if I could make it and get insurance approval. I have never backed down to a challenge, and this wasn’t going to be the first time. I had all the phone numbers needed (although at that time my insurance company was closed).

I had radiology email me the request for authorization forms, and I would call my insurance manager this morning first thing, fill her in, and email her the forms. I set an alarm so I wouldn’t forget!

As far as travel, thankfully flights are open since I fly standby. I rechecked myself into the same flight, and we didn’t lose our spots in the standby list, thanks be to God.

As far as hotel and car, that’s another issue entirely! Normally not an issue, but there is an oil and gas convention at the NRG stadium which is right next to MDA. Everything, and I mean everything, is booked up. No rental cars…no hotels… I ended up going through some third party website for hotels that said there was a hotel opening. Whether that’s true or not doesn’t matter now, I have a paid receipt with a confirmation number!

As for a car, we will take the shuttle to and from the airport.

It was a very long and exhausting day yesterday, to say the least. I had my mind, body and spirit all set for this Wednesday. Then they said it’s not available. I was able to catch my breath. Then they called and said there is an opening. I was now running around like a mad man now when just 8 hours prior everything was scheduled as far as travel and we were packed! Mind you we were out shopping and getting ready to eat dinner out when they called.

With all that said, we are at the airport in Detroit ready to fly to Houston via Dallas. Insurance has been called and approval is done. We have a room again for the next two nights. We have transportation again. Phew!!! Breathe, Ryan, breath….

I was talking to a neighbor yesterday about my circus of events. I joked about how I’ll beat this disease, no probelm. It’s the stress and anxiety that the behind the scenes people cause me that will do me in!! I really can understand and feel so very sad for the elderly and uninformed that have to do this crap. This is a lot of work for a patient to do. Sometimes I think they forget that I am the patient. I should remind them of the 5 brain surgeries (soon to be 6), 2 lung surgeries, and 71 rounds of chemo…..they probably wouldn’t care. I’m just a number to the support staff! Lol

Thanks be a God this all worked out. I’ve learned a lot in the past 7 years of fighting, and it really is amazing the things we can do in such short time.

One last Godsend, it is very foggy in Detroit right now. It is below landing minimums, but just within takeoff minimums. A 920am flight would normally be a turn flight rather than a kickoff flight. However, our flight is a kickoff flight meaning the plane is from the night before as well as the crew!! Let’s just say the passengers going to another destination most likely won’t be leaving soon since there airplane is currently in a holding pattern unable to land. However, we are currently boarded and ready to depart! smile emoticon

Phew! Ramble session is over for you all now. Have an amazing Tuesday!! We love you all, and thank you for all of your love and prayers. Houston, here we come!!

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Gamma Knife #5

13083351_10208272026070979_6990552492675996994_nGood evening! I hope this message finds your lives full of purpose and meaning. I hope that, no matter your age or walk in life, you have surrounded yourself with caring, uplifting, and inspiring people. I know I have, and I can thank you all for that.

I sincerely apologize for the delay in getting this message and update out. It’s been a crazy few days, but that is no excuse. I have built a platform where I like to keep everyone updated, informed and in the know because I get as much out of it as you do.

With that said, one of the downfalls of having the MRI early morning with consults the same day is that the scan will most likely not be read and finalized. Unfortunately, this was the case. I’m a factual and detail-oriented person, and I like to have all the pieces (or most if possible) before giving an update. This saves time and energy on both ends, and I hope it avoids missteps and incorrect information. It can be very easy to embellish emotionally if all the facts aren’t there. I try my best to avoid giving emotionally charged updates, and if I do, it’s only the positive parts and how to battle on.

Once again, we didn’t get the news we had hope for, but we also didn’t get overly devastating news either. Unfortunately, a new spot has developed in my brain. It is about 1.8cm by 3.0 cm located within my left hippocampus. Besides this spot, all previously treated lesions are stable, and no additional spots were remarked upon. I am asymptomatic which is always a very big blessing.

This lesion is more central than any previous lesion, but according to Dr. Li, there is enough clearance between it and the brain stem. With that in mind, it also fits within the size parameters for gammaknife. As you may have guessed by now, we are going in for gammaknife #5.

Thanks be to God, we have assembled a top-notch and fast acting medical team. I have to do my part on my end with insurance, travel, etc, but together we are able to get things scheduled quickly. Gammaknife is scheduled for this Wednesday, May 4. All of my travel has been arranged. We are ready to get it done!

As a side note, I have to stop chemo momentarily because one of the drugs (Gemcitabine) is reactive with radiation. We fully plan on starting up chemo once I get the okay. That would finish round 71, and it would be time for another PET scan. Talk about an emotional and stressful month!

I’m living and making memories, and it is for that reason that I can do this and the hardships are well worth it. No matter what we are going through and what trials and tribulations come our way, we can only live one day at time. When tough times fall upon us, shorten you window and don’t think too far ahead. Focus on the task at hand and take full advantage of this current and beautiful day.

I texted a few people once we had most of the facts in the hopes that it would slowly make it’s way to people’s hearts and minds. My sister and I discussed briefly about my emotions and how could I possibly have any energy left to convey my feelings. My answer to her was something I’ve learned and a skill I’ve acquired over the years.

Truth be told, I haven’t cried in a very long time. We’ve been through a lot, and we continue to endure and conquer. I also don’t get excited with good new. I’ve learned the best thing to do is stay in the middle. Don’t ride the roller coaster that can so easily consume ones mind. Figure out a plan. Pick up the pieces, if any. Move forward and fight.

We’ve been here before. We will beat it back again.

If we could steal a few moments of your time, please pray for our family. Please pray for piece of mind. Please pray that gammaknife is beyond successful again with no lasting side effects. Please pray for God’s healing hand to live a long life with the beautiful family He has given me. Looking forward, please pray the chemo is working and that my ensuing PET scan shows positive results for a disease that is losing it’s battle.

Thank you for always loving us, caring for us, and carrying our burdens when the road gets rough.

We love you all so very much.

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PET scan results & update

Good morning, and a very happy Monday to all of you! I hope this message finds you doing very well. I hope and pray your lives are full of love, purpose and memories. We only get one chance through this life. Make it count, and always know you have the ability to change something that isn’t bringing you joy and happiness.

I apologize for the delay in getting the PET scan results from last Thursday to you all. We had a very busy weekend starting with our much anticipated family fun day to Legoland, Sea Life Aquarium and Rainforest Cafe. We had an amazing time, and it was a much needed family respite.

In actuality, we did get the phone call from my local oncologist on our way to Legoland on Friday. After getting the news, I immediately got on the phone and left my oncologist in Houston, Dr. Ravi, a message as well as a text to see how he wants to go forward. I also called my local pulmonologist to have him personally review the films for his point of view. With that said, I have attached the report to this message.

In summary, it was not a slam dunk great report. First and most important, there are no new spots. As a side note, this scan is an important reminder to be your own advocate, take charge of your situation, and always be in the know about what’s going on. For instance, this current report remarks upon a “new” spot in my upper right lung. This isn’t true. It is not a new spot. It was remarked upon before, and we already knew about it. If we did not know or were for some reason unaware, it would change the clinical course of treatment going forward.

Unfortunately, both spots grew but as always, isn’t so cut and dry. The one in the lower lobe almost doubled while the upper lobe lesion grew slightly. The peculiar and somewhat promising notion from this scan (besides no new lesions) was the fact that both lesions had very minimal PET uptake. They were 1.1 for the lower lesion and 1.6 for the upper lesion based on a scale from 0-15 where 0 is physiologically normal. In layman’s terms, the lesions do not appear to be very active at all. They could be slow growing, dying, or something else entirely.

Furthermore, I have not coughed up blood in almost two weeks which is very reassuring. Most may not remember, but this is how the entire journey started for us. I began coughing up blood. However, I never stopped coughing up blood until after surgery. I take this as a very promising notion that something is working, thanks be to God.

Dr. Ravi called me back while we were in Legoland, and my pulmonologist called me back on our trip back home. Mainly, we needed to know Dr. Ravi’s opinion on what treatment, if any, we would do since I still had chemo scheduled for today using the same regimen.

Per Dr. Ravi, since the PET uptake was minimal and the fact I am currently not coughing up blood, he wasn’t convinced that the current treatment isn’t working. He stated an enlarging tumor especially with low uptake on a PET could mean several other things besides tumor progression. Some of these explanations could be an inflammatory change due to tumors dying or as Dr. Ravi described, a bleed over effect from this type of tumor. Long story short as long as there are no drastic changes in symptoms, he wants to do 2 more rounds (6 weeks total) of this current regimen and re-stage with another PET scan at that time.

april4-1The further you go along a journey such as ours, the more you are able to discern good news from bad news as well as the ability to take a step back, analyze a report, and decide for yourself what to take from it.

For this reason, we are grateful for this scan. There are no new tumors and it didn’t reveal anything catastrophic. Thanks be to God that we can continue on course to eradicate this awful disease once and for all! Thank you for all of your continued prayers! They’re working, but they’re working on God’s time frame.

With that said, I am currently getting infused with chemo round 70. My blood work came back amazing. I attached the report. God only gave us one direction to move, and that’s forward. No reason to look back. We will win this fight.

We love you all. Have a beautiful day.

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Chemo Round 68

Good morning to all of you amazing people in our lives. We truly cannot thank you enough for sharing all of the roller-coaster of emotions with us through this journey. It’s been a very long one with so many experiences, both setbacks and triumphs. Today starts the next chapter in this fight. Today is chemo Monday! My blood counts are starting out strong, and let’s hope they stay this way!

It’s been awhile since I’ve done a post like this. In fact, it’s been 3.5 years since I’ve done a chemo post while I was on gem/tax. Today would mark chemo round 68 total. That is a lot of chemo, and it doesn’t even factor in the daily temodar for 3 months. We beat this before, and we will beat it again.

I’ve attached my blood work for this round as well as a picture of my old friend, Mr. I.V. Pole!

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We love you all so very much. Always be thankful for the breath of life that is never guaranteed or promised by God. Know we are all blessed to share another day of life together, learning from each other, and always helping out a fellow person. Nobody should go through life without the support of another. It’s too exhausting. It’s too much for a single person to carry their struggles and weight of life upon just their shoulders. Even the strongest will buckle if not given the opportunity to share their fears and joys with another.

You’ve done so much for us. It’s not always going to be pleasant or happy or good news, but it will always be worth it. As long as I can personally give you all an update, whether it’s good news or bad news, it means I am still alive and winning this fight thanks be to God.

With that said, we thank you. Thank you for your continued prayers, funny stories, sharing your lives with me, and offering your wisdom gained from your own life experiences. Thank you for taking a lot of the burden from not only myself but from my amazing wife. We cannot and will not do this without you!

We love you, and have an amazing day.

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Change in Plans – PRAYERS PLEASE

Good afternoon, everyone! I hope this message finds you relaxed, smiling and full of life. We are here for only a short amount of time. Don’t waste a second by living in regret and anger. Some things are out of our control, but we can overcome just about anything if we help each other out. God works in amazing ways.

For our journey, we have had a slight deviation off of our current course due to a change in symptoms. Many of you weren’t part of this journey when it all started. Mostly because we didn’t share much the first go around back in 2009. We just thought it was a small blip in the journey of life, and Andrea and I were just beginning to start our lives as a married coupled. Almost 7 years later, we are stronger because of it, but who knew we’d still be staring this thing down?! Long story short, my initial symptoms back when this all began in 2009 was hemoptysis (or coughing up blood). In other words, blood is somehow leaking into my lung which should not happen.

Unfortunately and to our dismay, I began the same symptom of hemoptysis last Wednesday night. The amount produced is much less than before (about 1/4 of a teaspoon), but it is still worrisome and very problematic for my current course. Since it was late at night and non-life threatening for the time being, I decided to just tell Andrea and few other people. Nothing could be done that night so I decided I could start notifying the entire medical team in the morning to see where we would go now.

I didn’t waste any time the next day. I called a few physicians, texted a few others, and emailed a few others with the recent development. Through God’s good grace, every single one of the recipients responded quickly. The main goal of all the communication was to see what Dr. Ravi wants to do going forward – immunotherapy as we spoke about or something different. I wanted to get a local pulmonologist on board and up to speed. Lastly, I wanted the rest to know the update and the plan. I spent the next 1.5 days organizing and scheduling this new circus act. After everything was in place, I decided to take the rest of the week off to spend time with my family, especially on Valentine’s Day. It was well worth it, but I do apologize for the short notice to all of the amazing supporters we have!

Going forward, Dr. Ravi wants to sideline immunotherapy and start on chemo. He wants me to do Gemcitabine and docetaxel again. As far as side effects go, it was my worst regimen. It landed me in the hospital as severely neutropenic. It won’t be easy, but I can do it with your help! Bring on the fevers, flu-like body pains, possible thrush/mucositis, peripheral edema, etc.! Small price to pay for a lifetime of memories with my amazing family.

For now, I have my baseline CT scan this evening at 7pm. I have a consult with a pulmonologist tomorrow morning followed by a follow up with my headache clinic to see if we can get these headaches under control somehow.

We should get the CT results tomorrow morning when in consult with the pulmonologist. From there, we’ll decide where to go in regards to additional consults – mainly one with thoracic surgery and one with radiation oncology. Dr. Ravi doesn’t think there is a need to consult with them. However, should we need them in the near or distant future, it would be nice to have them on board already instead of having to spend an entire consult doing an initial consult and HPI later in the game. I’m just trying to be proactive as always.

Pending the CT scan results, it would be my understanding that chemo would start at the beginning of next week. Bring it on!

My prayer requests from you are all over the board right now. I just pray for peace and tranquility in these difficult times. We pray for answers, definitive answers one way or another. We pray for swift reaction times from those that have control to get any plan underway. Most of all, we pray for the continued ability to keep living this beautiful life and making amazing memories as we weather yet another storm. We are stronger as a couple and family because of this, but it certainly takes its toll over time.

We love you all so very much, and we so very happy that we can rely on you always and forever. Have an amazing and beautiful day. There won’t be another day exactly like the present one so please make it count in a meaningful and positive way!

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Fundraiser: Young Living Essential Oils

Hi everyone, for those of you who don’t know me, my name is Jessica, and I have joined with all of you in being a prayer warrior, cheerleader, and Facebook page stalker of Ryan as he continues to display his superhero-like strength in fighting this horrible beast we know as cancer. We have all been walking along side of Ryan on his journey and I think it is safe to say the emotional and physical part is this battle is always on our hearts and minds, but the financial aspect can be easily overlooked.

Starter KitAs Ryan is fighting his battle with his doctors, he is also doing everything he can to boost his immune system and keep his body functioning as well as it can through the support of essential oils. God has placed it on my heart for some time now to find a way to help Ryan out financially, while at the same time sharing my knowledge and passion of these wonderful oils. When Young Living announced they were offering a 10% discount on Premium Starter Kits (which never happens) I knew this had to be the month!

For the month of February, for every new member who takes the plunge into essential oils through ordering a Premium Starter Kit, I will be donating 100% of the profits to Ryan to help cover some of his costs so he can focus on his fight.

New to Essential Oils?

….but want to help Ryan out, do not fear! This Wednesday, February 17th at 8:00 p.m (EST) I will be running an Essential Oils 101 class on this Facebook Event page. It will give you information on everything from how to use essential oils to what each oil can/should be used for. It’s a fun and easy way to learn about these wonderful little gems and the best part- you don’t even have to leave your house!

Can’t make the class at that time? No worries! Just click that you are attending this event and you can look through the information at a time that is convenient for you!

Ready to place an order AND help Ryan with medical costs?

Step 1: Go to my Young Living Essential Oils website by clicking here.

Step 2: Make sure “Wholesale Member” is checked off instead of “Retail Customer”. It’s the only way to get access to the kit and the 24% discount you get afterwards. It’s really important!

Step 3: Make sure my member numbers (1828906) are in the blanks (they should be filled in you use the above link)

Step 4: Fill out all the information. It will ask you for your SS# but this is only for legal purposes so that you have the ability to sign others up for kits or do a fundraiser such as this one. If you never sign anyone up, your SS # will never be used. No worries. Don’t let it scare you.

Step 5: Make sure you write down your pin, user name and password when you choose it because you’ll need that in the future to log into your account to take advantage of your 24% off pricing.

Step 6: Select your Premium Starter Kit with the diffuser of your choice. Let me know if you have any questions! They are all great, but I’m partial to the Home or the Dew Drop.

Step 7: Scroll down to the Essential Rewards kits and click “no thank you.” You are never obligated to sign up, although it does have some great benefits. I can give you a lot more information about this if you would like it, just let me know. Click “Agree” and “Next”.

Step 8: Check out.

Step 9: If we are not already friends on facebook, friend me! That way you have easy access to me should you have any questions about your oils and I can add you to our Lemonade Library, which is an amazing resource for anything and everything essential oils!



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Immunotherapy Plan

Efficiency is the name of the game! Currently at the airport, and I’ll be on my way home shortly. Nothing like a day trip to Houston.

The consult went like this:

Dr. Ravi pops open the door and steps in a few feet. “Okay. We have an official consult. I sent out notes to BMS to get us started on immunotherapy.”

That would have been the entire consult, but I wanted to review the last PET scan with him. I asked him to pull up the images, and I took him to the slices in question.

As we thought, he didn’t review that site as it is small and near larger structures. He also mentioned a unique uptake in my upper left chest that is new (which we already knew about from the phone consult).

Either way, we are starting immunotherapy. Whether these are in fact disease is unclear, but we need these remarked upon findings to move forward with the treatment.

Next up is to get my local oncologist up to speed by giving them the notes and protocol.

All the pieces are in place. Let’s start a battle and beat this relentless demon into oblivion!!!

Thank you for all of your prayers. We love you!

February 8, 2016

Heading to Houston for just a consult with Dr Ravi. We usually do phone consults, but we want to get one “on the record” for what our plans are. Meaning, we need clinical notes and a discussion remarked upon in my medical record to bring my case to his superiors and also to Bristol Meyers Squibb (pharmaceutical company who makes the treatment we want to get on).

The plan is to start immunotherapy with Opdivo (I’m sure many of you have seen the commercial about Opdivo). We may include Yervoy to make it a 1-2 immunotherapy punch to this dumb disease!

The other thing I want to make sure we discuss is the remarked upon lung lesion. We weren’t entirely convinced he was looking at the same spot the rest of the team was. He’s the expert with AS, but I need assurance. Face to face time always gives me that because the physician is all mine during the consult!

We love you all. Thank you for your continued prayers!


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Brain MRI & PET Scan Review Part II

Good evening! I’m so sorry about the delay. It’s been a rough and long 2.5 days to say the least. As always, it can never be cut and dry. Furthermore, I arrived home about 1am last night only to wake up 5 hours later to start the day with the kiddos. For those with migraines, drastic weather changes with lack of sleep, a lot of stress, and a child that needs a lot of attention all day is a recipe for headache disaster. Needless to say, it’s been a long day, and we greatly appreciate your patience.

First, thanks be to God that the brain MRI was clear of any worrisome issues. The previously treated lesions were stable and show no signs of concern. Furthermore, there are no new spots to be remarked upon. This is amazing news. We don’t have an explanation of the sudden onset of intense headaches, but with it being non-disease related, I’ll figure it out! I plan to see a local neurologist in the near future to help me get a grasp on this! For the time being, thank you for praying so hard for a clear MRI!

Now, the sobering news isn’t so great. As you may recall, I had a PET scan about a week ago. Within the final radiology report, a small 15mm lesion with an SUV of 2.8 was remarked upon in my right lower lung. At the time, I convinced myself that it was an artificial/anomaly or some sort of inflammatory change non-disease related. I also didn’t have the actual images to look at yet to take a look for myself.

Fast forward to this week in Houston, I brought all of my medical records with me as I always do including the most recent images and report. With some down time prior to my consultations, I decided to some of my own reviewing of my medical history, especially of previous scans. I went back to my CT scan at the end of July 2015, and I found a disturbing note/remark. There was a lesion measuring 2-3mm at the time in the same exact spot as the lesion remarked upon last week.

It was not an oversight by any party involved. We would never let that happen. I remember vividly discussing those July results with Dr. Ravi. At the time, I was finally recovering from a very rough 2.5 month upper respiratory infection. There were multiple tiny spots remarked upon in that scan so we chalked it up to inflammation from infection at the time. Adding to our theory about those spots, my last PET scan in October did not reveal any abnormalities in the current area in question. There was nothing to tell us otherwise.

Unfortunately, the time between my very initial lesion in my left lung to my recurrence was 2.5 years. This was without chemo for 2.5 years. The precedent this disease is showing is peculiar in that it is a slow grower which is very unusual for angiosarcoma. I’ve been off of chemo for almost 10 months now, and it has been almost 3 years this February since my last known lesion outside of my brain. Timing is about right if you want to look at it that way.

In Houston once we received the all clear MRI from both Dr. Lang and Dr. Li, we were not leaving the consult with Dr. Li until we reviewed the PET scan with her. She is a radiation oncologist after all! After some figuring out with her staff on who has the images and report, we were able to view the images with her. As a side note, we could sense God’s presence and protection. I don’t believe in luck or coincidence. With that said, it just so happened that one of Dr. Li’s most trusted colleagues was in clinic still. This colleague is a radiation oncologist who just happened to be a lung specialist for the first half of her career (15 years) prior to transferring to head and neck. Needless to say, she took over this impromptu consultation. Pretty amazing witnessing story, isn’t it?

Unfortunately with my findings of the previous scan, this is very worrisome for a recurrence of angiosarcoma. Even without the previous scan, it still presents as my first lesion in 2009 did, just not as big. Since it was remarked upon before, this signifies growth between the 2 scans. We discussed treatment options from a radiation point of view. With the location and size, they recommended breath holding SBRT (stereotactic body radiation treatment) – it’s much like gammaknife with precision, but this is for the body and takes into account breathing and body movement. Due to the fact of only having one lung, doing a biopsy is unlikely because of the risk of a pneumothorax (collapsed lung).

To say this is devastating would be an understatement. I have no doubt about beating this disease again. It’s the implications of it’s return that have me worried.

We’ve done 67 rounds of chemo and 6 total surgeries thus far to hopefully destroy this devil disease. This is why recurrences are extremely difficult to handle. You’re starting at square one except it isn’t the initial square one. We’ve trekked so far already only to start with all the beginning problems just without the initial treatment options. There’s a lot to say about having a plethora of treatment options to try. It gives you so much hope, confidence, and strength. Don’t get me wrong. It’s far from over. I already have a lot of options I’ve kept in my back pocket and researched. It’s just a lot more work and research on an already depleted energy level.

So, now what? First, Dr. Ravi was out of country visiting family. He arrived back into the states yesterday, so I texted him. He’ll compare the 2 scans as soon as possible, but I have no reason to believe he’ll think differently than my radiation oncologist. I put a call into him this evening. He answered, but asked if he could call me back. I’ll hear from him some time tomorrow to update you all more. When we spoke late last week, he eluded to the fact that if this in fact angiosarcoma, he would want me to go back onto systemic therapy.

Next, nothing else changes. I still will not let it define my life or how I live each day. We’ve been blessed with so many days together as a family. I’ve been blessed with so many wonderful memories and so much love to fill 100 lifetimes. We’ve been here before. We know what to do, and we know how to do. One day at a time, and we can do it together. We need you just as we always have. We cannot do this without you.

We will fight. We will win. We will survive.

I love you all so very much. Please keep us in your prayers as always. Thanks for being my inspiration to want to live in this wonderful and loving world.

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PET Scan Results

Good afternoon everybody! I truly hope this message finds your lives full of laughter, joy and love no matter what life throws your way. It’s not always easy to laugh and smile, but it is always worth it.

Unfortunately, we did not get the slam dunk report we were hoping for. On the other hand, it wasn’t utterly devastating either. Don’t get me wrong, any report that doesn’t come back clear takes its toll on you. I have attached the report with this update.


There is a 15mm lesion remarked upon in my right and only lung (lower lobe) with an SUV of 2.8 (2.8 isn’t very high at all, but my disease has never been high on the SUV scale). If this turns out to be disease, it is small and can be dealt with. However, in the end if all minds believe it to be disease, I will be going back on systemic therapy as it would be a sign that it is most likely elsewhere in the body that we cannot see.

With that said, I don’t want to say I wish it were cut and dry. If it were, that would mean it is definitely positive for disease. We don’t want that. This is the very reason I greatly dislike PET scans, especially without contrast (we opted to forego CT with contrasts for now to give my damaged kidneys a much needed break). If you recall, my last PET scan had us chasing ghosts in my spinal canal and liver. Thankfully, both of those turned out to be nothing. It could very well be the case here. So here we are, again, chasing an anomaly.

Once I received the final report yesterday, I immediately mailed both the images and report to Dr. Ravi at MD Anderson. I also am going to bring my personal copy of the images with me next week just in case the mail doesn’t get there in time. MDA has a very inefficient method of getting mail to the correct locations and even more so to get outside scans read in a timely matter. For this reason, it is easier to bring my own copy so my doctors can upload and view them with us.

Personally, I am not convinced this is disease. This could possibly be because I don’t want to believe it, or I don’t think this disease would be dumb enough to take me on again systemically after I kicked it’s butt the first two times! Either way, and I am no radiologist, I could not find the lesion in question when I looked at the images. It is small and has a faint uptake value so the odds were pretty small that I would locate it, but I take that as a good sign since it doesn’t jump out at you like others have.

So, now what you may be asking? Honestly, we wait. We live. Once I let my amazing wife know the not so good news, I went back to my day. I played 2 riveting games of mouse trap followed by 1 exciting game of RangerLand, Jr. with Landon and Logan. This was followed by a wonderful evening with my beautiful wife. Life doesn’t stop nor should we. I’ll fight it no matter what it is. I’ll beat it like I’ve done many times in the past. Nothing changes.

Is this the very best way to start 2016? No, but it certainly isn’t the worst by a long shot. We just need a clear MRI next week to get back on track!

Please continue to pray for us. Please let this remarked upon lesion be nothing but another silly and pointless anomaly. Please pray next week’s MRI goes very smoothly!

We love you all very much. Thank you for taking care of us, always.

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Absence & Update

Good evening, and a very happy Sunday to all of you. I’ve been absent. I know. I cannot tell you how much the messages mean to me/us even though I was silentfor a time. We cannot thank you for always caring no matter the circumstances. We are loved by, prayed for, and cared for by so many. You never let us forget this fact.

gamma4-2For some unknown reason, I took an unplanned respite from Facebook. For this, I am very sorry as I realized I haven’t updated since Gammaknife besides the picture of me driving post procedure. As evident of me writing this message, I am alive and well, or as well as can be considering the wrenches that life keeps throwing my way!

For those that just want the quick and dirty, everything is okay with us. There were no complications with the lumbar puncture or the gammaknife procedure. Furthermore, the pathology for the lumbar puncture (which tests your cerebral spinal fluid) came back negative for disease which is great news! I never suspected anything within the CSF, but it’s always a great feeling to have a test come back negative and unremarkable. Lastly, my blood work is continuously showing improvement in my kidneys. I have stopped all NSAID medications as well as getting PET scans without the nephrotoxic contrasting agents that have been believed to be damaging my kidneys. We are taking out both of those factors (NSAIDs and contrast) to see if I get improvement in my kidney numbers.

For now, we wait until the first follow-up MRI which is scheduled for January 26 at MD Anderson with consults with Dr. Li and Dr. Lang on January 27. Furthermore, tomorrow we are beginning our 2016 edition of kicking cancer’s butt with our very first PET scan of the year, January 18 at my local hospital. Please pray for our very first of MANY clear scans and please pray for answers to my current and ongoing lower back/leg pain which has been on and off since August.

As for the day of Gammaknife, some of you may remember the last post I made prior to getting treatment was confusion as to why this procedure was scheduled to take 55 minutes. The lesions that were known to me were small, and there were “only” three of them. My very first gammaknife was 17 minutes long and treated a single lesion that was bigger than all of those in question this time. My third gammaknife was around 45 minutes long and treated two lesions, one of which grew to a 3cm lesion. My second gammaknife was somewhere in-between those timeframes. With that said, I could not fathom why this procedure was going to take the longest. The only reasons known to me were number of lesions, size, and complexity. My mind decided to concentrate on number of lesions and size. To make matters worse, when I asked the nurse how many lesions were being treated, she said Dr. Li wanted to speak to me first. Good grief! That isn’t what any patient wants to hear, especially moments away from surgery!

It was a very long wheelchair ride (they make me despite all efforts to showcase my walking skills) down to the gammaknife suite as my mind went every which way. As Dr. Li came in the room, she didn’t waste any time. She said the radiologist remarked upon quite a few spots. I asked how many, and she said many. She quickly went into what the plan was. I’m a visual person so she took us to the computer to view the images together. She said Dr. Lang and herself went through each remarked upon spot and each image to discuss/debunk any and all that they could. Many were artifact findings (anomalies) and some were ultimately determined to be blood vessels. It is my belief that the machine was an older MRI machine because the quality of the sequence we looked at resembled what seemed to be an inkblot test! The use that machine because of its thinner slicing capability for higher resolution images within the contrasting sequences (remember they use T2* for my case). Between the two of them, they decided to treat 2 lesions, and the 2 lesions happened to be ones we knew about and expected. They were the right frontal and left parietal lesions. As a side note, none of the lesions enhanced which is a very good thing. Either they were too small or they are something else entirely.

Here is the excerpt from the radiology report for the above mentioned MRI:

Findings: There are 10+ foci demonstrating decreased signal on susceptibility weighted imaging arrowed on series 3. A total of 2 lesions within the left parietal lobe focus demonstrating patchy enhancement (series 3 image 55) and another one in the right frontal lobe (series 3 image 45) to be treated today. A couple of indeterminate foci are circled, as are previously noted areas within the right temporal lobe. Prior treated lesions and right frontal resection cavity are unchanged as is the associated enhancement. Ventricles are age-appropriate in size and configuration.

IMPRESSION: Gamma knife planning MRI for 2 foci of decreased susceptibility effect within the right frontal and left parietal lobes.

gamma4As for my absence, it is hard to convey a fighting spirit or a vision of hope when pain is present. To compound the issue of my back/leg pain, I’ve had almost nightly migrainine-level headaches that wake me up. I had migraines when I was a younger, but after cutting out sugar and caffeine, I haven’t had one in many years. I blame it in larger part to this crazy weather after having spinal fluid drained with a lumbar puncture a day before having a gammaknife halo attached at 4 pin sites. I’m exhausted to say the least, and I use every ounce of my energy on my wife and children and rightfully so.

For those that have chronic pain, you can attest to the fact that it takes a whole lot of energy to just bring your mind to live each day. It isn’t the pain level that is an issue for me. I can withstand a lot, and I am not one to complain about being in pain. It has never been my thing to do. This isn’t to portray a “tough guy” or “macho” persona. Quite the contrary. It is my belief that the more you talk about a negative (pain in this situation), the more it becomes a focal point of conversations. It isn’t something I want to dwell on, focus on, or draw attention to. It’s life. It happens, and I want to train my mind to not focus on it so I can live how I want, when I want, and do all of this with a smile. It takes a lot. It is a constant battle between mind and body. Personally, yoga/meditation plays a very big part in trying to control what is real and how your mind/body perceives each anomaly. Let’s just say it’s a work in progress! smile emoticon Please don’t misconstrue that if it started to greatly affect my mentality and daily actions toward other people, I would seek professional help as this can be very detrimental to not only myself but for all those I surround myself with.

Personally, I am not concerned that the migraines and other pains are in any way cancer related. They don’t fit what I know, there is no logical pattern as to their happenings, and they are not continuous. However, it’d be nice to know what’s going on. We’ll find out soon!

There. Now that the not-so-fun stuff is up to date, it is a huge relief. It’s been on my mind every day, and the wonderful messages of love and worry have been amazing. Thank you!

In closing for now, one of my physicians before year’s end mentioned they hope that we have better luck in 2016 than we did in 2015 against angiosarcoma. While I know what they meant, I just gave a simple reply. We made it to 2016. What else matters? No matter the journey, isn’t that the goal? Are we not trying to just survive with any means possible? For me at least, 2015 was a very successful year as were every year previous. Life is what you make it. You try and control the things that are possible, and you rely on the collective of an amazing support group to help you through the things you cannot. When all is said and done if it is God’s will, we will live and survive to tell of our great feat that we accomplished through prayer, tears, strength, hope, fear, and determination. And we did it together. Apply that to any situation in your life as well. It’s universal no matter how unique each of our journeys are.

Thank you for being a part of this thing called life with us.

Please continue to pray for us, especially with my PET scan tomorrow and MRI the following week. Have an amazing evening. A little late, but a very happy New Year’s to all of you.

We love you so very much.

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Gammaknife #4 this Friday

I pray you are all enjoying your lives and laughing as much as possible. We sure are trying over here, albeit it is very hard some times. If we can do it, so can you! Life is too short to live in the past or be upset.

I just heard word from Dr. Ravi in reference to him reaching out to an expert in diagnostic radiology. Here is what his colleague said:

“Reviewed early studies going back to 2-5-14 and patient has initial lesion consistent with brain metastasis and foci of hemorrhage and later developed other similar lesions.

These are consistent with angiosarcoma but not specific.

However, with no other tumor presenting itself during this time then need to fall back on metastatic angiosarcoma even though unusual.

I don’t see anything that would suggest infection or parasites thus left with metastasis.”

In other words, our glimmer of hope that this is anything other than the devil disease has been shattered. Gammaknife #4 is still a go for this Friday! All the ducks are in a row, and I am ready to forge this battle once again. Onward and upward!

We love you all, and please keep us in your prayers. The only uncertain thing at this time for surgery is whether we are treating 1, 2, or 3 spots. We’ll find out soon enough.

Thank you for being with us during this awful times. I wish so bad they would just go away!

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Recent Scan Results

Good afternoon, and a very happy Thursday to all of you incredible people in our lives! It was a very long day yesterday, and we had to do a lot of running around with extended consultations with both Dr. Li and Dr. Lang as well as an additional phone consult with Dr. Ravi on the way to the airport. I finally arrived home a little after 1230am only to wake at 6am to take Landon to school. I’m exhausted! Honestly, I’ve just been spending time with my 3 year old who is happy all the time. I need a little happy, and he cracks me up! I’ll try and keep this as short as possible (not so much), but as always, it’s a bit complicated.

So, it wasn’t the news we had hoped for. Whenever I start having too much fun and enjoying life again, life tries to intervene! However, we can do this. There are 3 spots that were collectively remarked upon by Dr. Li and Dr. Lang, but it gets complicated and frustrating about what to do which I will go over later. One is located in the right frontal lobe anterior to the large resected tumor (laymans: it’s in the right front part of my brain between my outer forehead and previously removed 3cm lesion from my open brain surgery). Second is located in the left occipital area (back left part of my brain). Third and most worrisome to me is in the right hippocampus (deep within the brain). None of these lesions enhanced, and they were only noticeable on a specific sequence called T2(star). For now, gammaknife is tentatively scheduled for December 18 pending some outside opinions my physicians are seeking from trusted experts in radiology and neurology.

Unfortunately, the radiologist who read the scans didn’t pick up on any of them. It is not a lack of professionalism or lack of care by the radiologist. My lesions are usually picked up first on what is called the T2(star) sequence. Before my case, my neurosurgeon and radiation oncologist hardly, if ever, looked at this sequence of imaging to determining new lesions. Given my clinical history, they go through this sequence with a fine tooth comb now.

First, the blessings are plentiful. I always try to look at what I am thankful for in any situation because there is always something. We are always protected and cared for by God in one way or another. We are blessed with an absolutely incredible medical team. As I mentioned above, they are meticulous about every image and scrutinize everything. They went through the scans independently and remarked upon these spots on their own.

Second, my insurance is absolutely amazing. I will not get into a debate about healthcare, but from my point of view knowing many patients, there are many horror stories these days concerning benefits dropped and out of pocket expenses. For me, I am beyond blessed to have the insurance I do. I have both a case manager and nurse manager who call me every week or two to see what I need, where I need it, and how soon. They personally take care of everything so I do not have to worry. They are amazing and are angels in this fight. We struggle financially as it is, but without them, we wouldn’t be able to do what we do.

Third, our support group is second to none. Thank you for caring, loving, and following our story. You stay by us and remain diligent in protecting us and covering us with prayers no matter how much time passes. You have not wavered in this fight, and because of that, neither should I. We will win this. Thank you!

As far as a plan, it’s complicated. My doctors are baffled as what to do. At this point, the issue is what are we fighting. My neurosurgeon questioned it this time, as did Dr. Ravi. Dr. Ravi is seeking an outside consult of a trusted friend of his who is a talented neuroradiologist. We will see what her thoughts are concerning this new findings and decide from there how to move forward.

Our options are either to do gammaknife next Friday, December 18, or do a short interval MRI in a month to restage these spots. The main concern is it isn’t entirely safe to irradiate areas that are benign. If they are in fact angiosarcoma, it is an easy decision. Unfortunately, there has been no confirmation that this is angiosarcoma. So…what else could it be? We have no clue. It could be any myriad of things, but none of them make sense. To make matters worse, the resected tumors from my craniotomy were completely necrosed and impossible to get any pathology out of them. In other words, they were completely dead tissue with no way to tell what sort of disease they were. Furthermore, these new spots are far too small to conduct any sort of pathology. Adding on, the doctors are in disagreement as to which spots are disease, which are results of brain surgery, and which are ???…who knows what. It’s all speculation, but in a twisted way, it gives one hope. It gives me hope and a drive to figure out and fight this off. It helps me focus, fight and move forward.

Obviously, I have my doubts that this is anything other than angiosarcoma. It wouldn’t make sense if it was something else, but it also doesn’t make sense on how these are surfacing, how they are presenting, and how they are behaving. It’s very complicated, and it is extremely exhausting. I cannot even begin to describe the feeling of uncertainty on what to do let alone what we are dealing with.

If we wait, does it give this a chance to progress if it’s disease? If we treat aggressively, are we over treating something that could end up being potentially harmful in the long run because it’s some benign anomaly? Are we missing something somewhere else in the body that is feeding these rogue sites? If we are to irradiate the hippocampus area, we must somehow be absolutely certain this is a malignant disease as this area of the brain is extremely important in our physiology.

With that said, we are scheduling a lumbar puncture to test my CSF fluid to make sure we aren’t missing something else with the CNS. Let’s hope and pray no abnormal cells are found within my CSF!

Long story short, we are assuming these are progressive lesions that need to be dealt with immediately. Gammaknife is scheduled for December 18 already as the surgical schedule is rapidly filling up due to the holidays approaching. Out of the 3 lesions, the only one agreed upon by all parties to be the most threatening is the left occipital anomaly. As for the right frontal spot, Dr. Lang believes it to be a result of surgery whereas Dr. Li believes it to be something else as it has noticeably changed within the last 4 MRIs. As for the spot within the right hippocampus, it does not enhance, and it has remained unchanged for about a year. It’s still there, still visible, and still needs to be monitored.

We will wait to hear otherwise about gammaknife. Please pray for us. And if you hit the lottery, please consider sharing as these back and forth trips, surgeries, travel expenses are getting rather expensive for us. 6 years of doing this starts to add up! Thank you, SO MUCH, for all of the fundraisers you have held for us over the years. I cannot begin to tell you what a blessing those have been!

We love you, so very much. I do not have symptoms. I remain active and healthy on the outside. It’s a lot to absorb, think about, and decide, but I will remain positive, hopeful and determined as long as God continues to pave the way and bless us with the breath of life.

Have an amazing day! And thank you for all of your kindness.

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For once, I will keep this short and oh so very sweet!

3 scans completed.

3 scans with no evidence of disease!

I don’t think this round of scans could have been any more fatiguing! Furthermore, not much else can get scanned unless we go organ by organ.

Thanks be to God, I am NED!!

Say it with me – N.E.D.!!!

His mercy is with us, and I do not know why. We are forever grateful. It’s an amazing day. Please join my family and me in saying a great big prayer of thanks. Thanks for His continued humbling lessons. Thanks for His healing touch. And thanks for his mercy and promise of never leaving our side.

Along with this note, I have attached the 3 radiology reports (T-Spine, L-Spine, and Abdomen). I also attached messages from members of my amazing medical team (Dr. Ravi and Dr. Lang’s team). They are truly a gift from God.

We love you all!1970597_10206905308343890_55712003771229172_n 11990544_10206905306463843_773231824110258064_n 12038249_10206905307863878_2801298576858209809_n 12047080_10206905305823827_7762379234582772430_n

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October 14 Update

Good evening! I know quite a few of you are worried about us, but please don’t be. I am extremely sorry about the delay, but trust me when I say, I am exhausted. I was up for 22 hours straight yesterday starting with my MRI in the morning and finally getting home at 215am only to wake up at 615am to start the day with our boys today. I still haven’t caught up on sleep, but I must get this out to all who care and love us so much! This is the first chance I have had to sit down and write to you all. I’ve spent a lot of the day trying to get more tests ordered and trying to figure out who want’s what and where.
As with the norm, there is no cut and dry scenario especially when I am having 2 different scans. Something will almost always be remarked upon. We’ve known this, and we’ve been through this many, many times. With that said, I have attached both radiology reports (MRI of the brain and PET/CT of the body) with this message.

12109306_10206857959480198_8105810652015327358_nThe MRI of the brain was great. There are no new visible lesions, and all other treated lesions are stable or decreasing in size. This is amazing news, and one I that always has me up at nights thinking about. My brain, as of this scan, is clear of visibly active disease. Thanks be to God! And thank you, so much, for all of your continued prayers and words of hope and love. They can get us through anything and everything!

12096046_10206857960000211_8482937192464164641_nAs for the PET scan, there were 2 things remarked upon. First, there is abnormal uptake within the spinal canal at T11/T12 (last 2 thoracic vertebrae). As you can read in the impression of the PET scan, a spinal MRI of this exact area is warranted. A few notes about this finding before we go on. It would be very rare (I’ll never say impossible) for this disease to be in this location within the spinal canal. All doctors agreed upon this, and Dr. Ravi has never seen a case with angiosarcoma. Also, some may remember I had a spinal MRI just a month ago. With our physician’s eyes on it, we compared the PET findings with the spine MRI from a month ago as well as the CT portion of the current PET/CT. We could not find anything suspicious or of any concern to coincide with the abnormal uptake.

The spinal canal is small, and in order for something to light up on a PET scan, it would have to be of a certain size. There was nothing to be seen. However, any and everything is speculation from all parties right now so there is no use going into all that it can and cannot be. The list is plenty long. An MRI of this specific region (T6-L4) will hopefully be ordered soon, and this will put the issue at rest most likely. I’m hoping my local oncologist’s office can get it in the works tomorrow.

As for the second item on the PET scan, there was abnormal uptake within the right lobe of my liver. Dr. Ravi was able to view what the radiologist was referring to, but it is hard to say exactly what it is at this point, IF anything. As he stated, all PET scans are good for, currently, are to indicate areas of possible need for further investigation with more detailed imaging. This is one such case. As with the spine, an MRI of the liver with and without contrast is warranted as well. We hope this will put this at bay once and for all so we can move on to living cancer free!

If you are lost at the above, long story short: it was a great trip with good news. We have just a few hiccups to take care of with further specific imaging. For the time being, I do not have any confirmed, active cancer. We are pending NED status. The list of what this could be instead of cancer is long up to and including a fluke or misread from the PET scan itself. I am not going to lose sleep over it (I don’t think I can afford to lose any more sleep) nor should you.

The facts are this: brain MRI is clear of active cancer – amazing news! PET/CT is clear of active cancer pending an MRI of my liver and my inferior thoracic spine. The increased uptake anomalies mean nothing until confirmed or cleared by a high resolution scan with/without contrast.

It was a great trip! And I am so happy to be home with my amazing and beautiful wife, and our very active and healthy two boys. We love you all! I will most definitely keep you updated on when the scans will take place and what the results are.

Please enjoy every second of your lives, and tell those who care so much about you how much you appreciate them in your life. We can never do this alone. We shouldn’t have to do anything in life alone. We love you all, and please say a prayer to God of thanks for us. Have an amazing evening!

My Spine MRI is this Thursday at 715pm. My Liver MRI is this Friday at 815pm. We most likely won’t get a result phone call until Monday. Since I can’t wait that long, I will go in Saturday morning to see they have been read.

Please continue to keep us in your prayers. Very stressful days lately!

We love you all so very much.

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Once Again – NED

Sept 2 ScansHello from Houston!
I’ve been having some pretty high level and constant pain for the last month involving my left iliac / lumbar spine area with pain shooting all the way down my leg. I’m very pain tolerant, but I get more suspicious these days about anything new regarding my body. This being said, we had an impromptu T-, L-, C- MRI (MRI of the entire spine) performed. The added 1.5 hours that took threw the entire day behind. We rushed over to consult with Dr. Li and rushed to Dr. Lang shortly after. We went back to the hotel to pack and checkout, and hurried to dinner and the airport!

We can breathe now!

For some reason, NED is following us everywhere. wink emoticon Yes, we are once again –

Thanks be to God for miraculous healing and answered prayers. Dr. Lang is concerned about my sciatic issues still even though the spine MRI came back clear.

To be safe, we are going to do another short interval MRI with a PET/CT this time in about a month.

For now, let’s live our lives to the best of our ability!




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CT Scan & MRI Update

I hope this message finds your lives full of love and making wonderful and long-lasting memories.

August 4 2015 MRI August 8, 2015

I am so very sorry about the delay in getting this message out. There is a reason this recent trip to Houston was scheduled during this time frame. We got the results and had to travel home on Wednesday. I arrived home Wednesday evening at 130am. I had to wake up early and finish the CADD drawings for work that I was unable to finish prior to leaving for Houston. I finished them just in time for Andrea to return home. Once home, we had to finish packing in order to head to Peoria – the whole reason for scheduling this week’s appointments early – for my brother’s wedding! We arrived into Peoria late Thursday night at about midnight.

We spent yesterday walking around and visiting Peoria, including the CAT world headquarters followed by a hands-on museum. We then went to the wedding rehearsal followed by an amazing dinner with everybody. Long story short, this is our first chance to get a message out to all of you. We so very much appreciate your patience and understanding. We’re just living our lives and making beautiful memories in the face of adversity.

Recapping first, the amazing news with the CT scan is huge. We are calling that part no sign of disease with the intent to keep an eye on what was mentioned by my local radiologist. Dr. Ravi did not see anything of concern within my one remaining lung. Praise God!

As for the MRI, it is not good or bad … yet. For the most amazing news from it, there are NO new spots thanks be to God. That is a very big thing! Unfortunately, the lesion in the left frontal lobe that was small and barely detectable and ultimately treated with Gammaknife back in May isn’t behaving the way any of us would like. As a side note, there are expected changes with any surgery. You can expect edema and possibly some increase in size (doesn’t mean growth) due to inflammation for some time after.

We had our routine one month Gammaknife MRI at the beginning of July, and the report read great concerning all treated lesions but especially the most recent SRS surgery. Concerning the left frontal lesion that was treated, it read “Redemonstration of treated bifrontal lobe lesions without any evidence of new intracranial enhancing foci to suggest intracranial disease recurrence. “

Unfortunately, the current MRI read anything but normal. Furthermore, my neurosurgeon is on FMLA for most likely another month, and his input is crucial at the moment. I have a message out to his staff, and they reached out to Dr. Lang. Ironically, he is currently in Michigan! In short, the current MRI (attached to this message), reads: “redevelopment of enhancement at the site of a previously stereotactically treated metastatic lesion within the left frontal lobe, now measuring 5.2mm.”

We saw another surgeon, and he voiced a different point of view than that of my radiation oncologist. As another side note, this is why it is critical, as a patient, to have a multidisciplinary team especially this far in the game. Every physician has seen things differently in their careers, and all are equally as important.

Dr. Demonte, neurosurgeon, clinic note:
“Current MRI of the Brain, per Dr. DeMonte, reveals a 5mm enhancing left frontal lobe lesion near the site of recent radiosurgery. He is concerned that this may be new disease versus inflammatory, radiation-induced changes.”

Dr. Li, radiation oncologist, clinic note:
“His most recent scan of the brain shows slight increased enhancement along the left frontal lobe lesion, which looks most consistent with radiation change as opposed to progression.”

I share all of this, every time, for many reasons, but no more than to show you what we are faced with almost every time. There is no right or wrong. Nobody knows so we have to make a decision with our gut and past precedence. It’s fatiguing.

I voiced my concerns to Dr. Ravi that I am not at all convinced this isn’t disease progression. He agreed, and we will wait to see what Dr. Lang’s interpretation is. For the time being, we are doing close follow up scans for both the CNS and rest of the body. In other words, 4 weeks for the next MRI to check on the status of the brain and 6 weeks for the next CT scan of the body to check it all but most importantly, to check the status of the right lung.

What now? To be as cliché as humanly possible, we live, laugh and love. It doesn’t change a thing. We hurried home from Houston, as planned, to do what was mentioned earlier, and now we are having an amazing time in Peoria.

This isn’t bad news nor is it good news. However, I would like for once to just post NED. Unfortunately, it isn’t in the cards at the moment, but it will be.

One might ask, “why does God allow this to happen?”. Honestly, if that is your thought process, you are looking at this from the wrong perspective. The answer is thank you, God, for not allowing this to be so much worse. Thank you, God, for giving me a beautiful life with a very strong woman and two amazing and HEALTHY children! Thank you for all of the wonderful memories to date and the many new memories to come. And thank you for giving me the tools to fight this disease, which includes but is not limited to, the most amazing support group ever know, present day treatments, and the most excellent of physicians.

Please pray for use to get through this month leading up to the next scans. Please pray for an amazing outcome in the next round of scans. Please pray for peace of mind and the continued ability to live life to the fullest making memories full of laughter and love. And please pray that my brother, Kyle, has an amazing day tomorrow followed by a lifetime full of love and happiness as he marries the love of his life, Abby.

John DeerAs we visited CAT world headquarters yesterday (and it was amazing), it would only be right to drive to Moline and visit the John Deere world headquarters today followed by a water park tomorrow before the wedding!

Don’t let life’s circumstances define you. You define your life and how it is lived, God willing.

August 11, 2015

The image studies came in the mail from MD Anderson yesterday. If you are a visual person like me, all you read with my update on Saturday was bla, bla, bla … not a good MRI, but not a bad MRI either … yet.

I put together a comparison of the most recent MRI (August 4, 2015) to the one month post gammaknife MRI (June 2, 2015) to show you why there is concern.





(click image to enlarge)

You’ll want to take note of the different shading around the areas (contrast difference – enhancement – edema (bleeding/swelling)), difference in size and just the general appearance in one and not the other.

One might say the images are cut differently especially with only 24 images per series in some (multiple series in an image study). This is very correct AND very important to consider. However, I matched the 2 up as accurately as allowed by the 2 different studies. For the ones where it shows up now and not before, I was meticulous in the fact to make sure that it shows up on multiple slices (unable to show here since they are still images). This means that although the slices are not at the exact same point in comparison, by spanning multiple slices it should show up on both if it is present on both.

^^^^^what this last paragraph equates to is that I did my due diligence in selecting relevant images. I did not post inconclusive evidence when comparing where it just isn’t obvious between the two.

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Update & Request for Continued Prayers

7-27-2015scanGood evening, and thank you for all of your love and prayers. We need them, always, as does every single person.

Nothing would make me happier to say that it was a home run / slam dunk scan, but I cannot. It was remarkable, and the remarks concern my one and only lung.

3 subcentimeter lesions were mentioned within my right lung.

It is too early to tell what they are exactly, but they are big enough to be mentioned. They were also not seen on previous scans.

Could it be nothing? Absolutely. Could it be everything? More than likely, but it is out of our hands either way.

The plan is to stay the course as we always have. Fortunately, my day to day life keeps me very busy playing with and chasing kids (sometimes chasing Andrea!). In your every day John Doe with no health issues, these would probably not have been mentioned. However, my disease course is anything but normal. It’s best to catch things early.

God’s timing is perfect. He does not control the disease. He is not responsible for the disease. The disease just is. However, He has made many amazing blessings happen with timing, with how this disease has played out, with how things always come together, and the list goes on.

11750625_10206263656222988_4073803276359594511_nWith that said, I just had the perfect two vacations with my beautiful and amazing wife as well as my children. These vacations were right before this news. Why does this matter? It matters because I experienced these memories as a father and husband who was NED. That is crucial. I experienced them without the thought of cancer. I was able to laugh, run, swim, and hike without a disease care. Literally, it was as if it was just a nightmare, and we were waking up to a beautiful reality.

Furthermore, we already have appointments with my neurosurgeon, oncologist and radiation oncologist in a few days. I don’t have to stress and scramble as I have done in days past to formulate a meeting of the minds. I can relax. Yes. Relax knowing that we will be at the drawing board soon making a master battle plan. We will win the war. It’s just another battle.

Please pray for nothing to show up on the MRI next Tuesday (August 4, 2015). Please pray for peace, for options, for treatments that work, and for my family. Please pray for a long life with my family and friends.

We love you all, so very much. Hug your loved ones a little tighter for us tonight. Make memories. Forgive.

Thank you for being with us no matter what.

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Finally N.E.D. Again!

June 2015 scans1 June 2015 scans2 June 2015 scans3Thank you for all of the amazing notes and messages today. It was truly a stressful time with 3 consults and 2 scans within 1.5 days. We are now at the airport about to head home! I cannot wait to be in the arms of my family.

With that said, please take a moment to say a prayer for us. A prayer of thanks. A prayer to say thank you for providing such an exemplary medical team. A prayer to say thank you for another amazing results. To our surprise, both the MRI and PET scan were both read. The reports are still preliminary, but they both read no evidence of disease. NED!

We came. We saw. We fought. We conquered again, and we could not do it without you all!

It is truly a miracle, and only God is capable of performing such an amazing feat against such a horrible disease. We are far from being in the clear, but we have the upper hand again.

I will be going on treatment again, and it will most likely be immunotherapy. Since I do not have an active tumor to biospy, we are going to test my last tumor for specific genetic markers for different immunotherapies.

We have this. Let the fight continue! We love you all so very much. Time to celebrate and fight harder!

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Gamma Knife III

11133795_10205685153400779_8846874568860267315_nApril 30, 2015 6:22 am
All checked in and waiting in the bellows of MD Anderson to be called. One of the only times I’ll be really early for a treatment as it could help my chances of being the first patient!

I was talking with my wife on the way over, and I told her it was like taking the long walk of shame. She said sorry I had to do it alone (I came alone…my choice, Andrea will be coming later this afternoon).

I told her everyone takes the walk alone otherwise you’re just going out for breakfast. No shame in breakfast! tongue emoticon

Thank you for keeping our minds busy with all of the beautiful and heartfelt texts, emails and messages. Since I am alone, I’ll update when I can probably in this thread to make it easier.

9:57 am
Halo is on and MRI is all done. The MRI took longer than usual because they had to do extra sequences because it is so small.

Great news is it (the disease area) still remains very small. They just called up to my floor and are coming to take me down to surgery.

It’s going great so far! Thank you for the continued prayers! We love you all!

11:51 am
All done! Finished a little over an hour ago. It was only a 14 minute procedure this time. Shortest one yet! Looking forward to the days of 0 minute procedures because I’ll beat this thing! wink emoticon I have to be monitored for complications until about 1215 CT, and then I can be released!

It’s been a great day so far! Thanks be to God for always taking such great care of us and for assembling the most amazing medical team imaginable. We are blessed!

I also had the amazing opportunity as a “veteran” GammaKnifer to talk with an elderly woman who was very nervous. So nervous that she was on the brink of having to cancel her GammaKnife because of elevated blood pressure.

With that said, we had enough time to chat. I asked her what she was nervous about, and we spoke about how the whole process goes. I told her out of all the treatments and procedures this was the easiest to endure, and more importantly, it works! I chatted with her about how the treatments won’t always be easy, but they will always beat the alternative. We both have so much more life to live. Not sure if it helped her or not, but we laughed at the end. And she is currently getting her GammaKnife.

In life, use what you know and have experienced to pay it forward. Nobody fights alone!

We love you so very much!

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