Thank You For Your Continued Prayers…..

Good morning, and a very happy Friday to all of you beautiful people. Once again, thank you for all of your love and prayers each and every day. It is my honest and humble opinion that your unwavering support is what gets us our miracles and allows us to fight each and every day. We truly love you all.

First, I hope it is well known by now that no matter the news, good, bad, or indifferent, I/we will share it with the utmost honesty and as quickly as possible. I mention this only because it may take us a day or so to update everybody due to additional appointments, scrambling to get from one place to another, and most importantly, sheer exhaustion. I mention this disclaimer provoked only by my own conscious because I regret not updating everyone as soon as possible.

As for my results, they were very good. God has blessed us and continues to bless us with miracles on His own time. I’ll explain what this means in a minute. For those that are curious, my official MRI report can be found here:

October 8, 2014 MRI – MD Anderson Interpretation

When praying, hoping, and dedicating moments to God and ultimate healing miracles, it is sometimes hard and complicated to see what exactly has been answered. Sometimes it may miss our sights; other times it takes a while to see. While we always hope and pray for remission, cure, squeaky clean scans, and the like, the reality is these scenarios rarely happen on such short notice, especially against an aggressive and multifocal disease such as angiosarcoma. It is sometimes hard to align our idea of a miracle with God’s actual miracle. Acceptance in the unknown, faith in God and prayer are essential parts of this equation.

For those who didn’t jump on the MRI report above and continued to read my rambling prior to any updates, there were no new spots discovered. Furthermore, there was no increase (or significant increase) in the large treated lesion in the medial frontal lobe. As for the previously treated smaller 2 lesions, they remain stable or decreased slightly in size. Not only are these findings important on the efficacy of GammaKnife (nothing was considered progression of disease), they are crucial in the continuance of my current chemo regimen of Taxol. Had there been any progression (new lesion or blatant growth of a previous lesion), all bets are off with Taxol, and we would have had to scramble for a new therapy. However, this is not the case!

As we would truly have hoped for a decrease in size of the larger lesion, it is not necessarily a sign of anything bad as of yet. We have to get through 1 or 2 more monthly MRIs to consider surgical intervention on this lesion. Although the size is about the same if not slightly larger, the way it contrasts is different indicating possibly a good response to GammaKnife. Due to the initial size prior to treatment, it can be expected to fluctuate in size for a period of time due to edema and inflammation. Without physically going in via a surgical approach, we will never truly know the state of any lesion. We rely on scan comparisons to determine the state of disease. With that said, all of our consults went very well in the aspect that all the physicians feel this is a step in the right direction (we have yet to speak with the neurosurgery team as Dr. Lang is out of the country).

As of now, we will have to continue close monitoring of the brain. The concerning aspects (and why this isn’t a grand slam follow up) is the increase in edema (swelling) surrounding the large lesion and the hemorrhagic component (active bleeding) within the large lesion, both of which can cause problems if they don’t subside and retreat soon. These could be signs of treatment response or signs of treatment failure. Time will tell, but our medical team feels confident that treatment is working.

Going forward, this follow-up undoubtedly indicates we can continue on weekly chemo treatment of taxol. In addition. we had mentioned a month or so ago the possibility of adding Temodar thus creating our own single case study of the combination of taxol/temodar. This drug has been approved by my insurance, and Dr. Ravi thinks it is a great idea to add. We will be adding this drug starting Monday night.

The importance of temodar is it’s ability to cross the blood-brain barrier in significant quantities. This barrier is somewhat of a protective fortress for your brain. It is quite an impressive feat of biology, but in my case, it has been comprised. My disease has penetrated and taken up residence in my brain. In some circles, it is felt that once comprised, chemo drugs may have an easier time getting through that would not have otherwise been significant across the barrier. I’m not entirely convinced of this fact, and it is the sole reason for me pushing for the addition of Temodar.

Systemically, taxol is quite effective against angiosarcoma. Within the central nervous system, the efficacy is drastically reduced due to its inability to enter in any appreciable amounts. In essence now, we are using a drug that has great systemic response (taxol), and one that has a great response across the blood-brain barrier (temodar). The only caveat is the literature doesn’t have anything of significant value in the response and efficacy of angiosarcoma and temodar, let alone the combination of taxol and temodar that hasn’t been tried yet. As long as we can keep this disease at bay, we are doing well. I can live, literally and figuratively, with fighting a chronic disease.

We can breathe a short sigh of relief as hurdle 1 of 2 has been surpassed. Unfortunately, the stress will soon mount again as I have my follow-up PET/CT scan this upcoming Tuesday (Oct 14) at 745am to determine the status of disease throughout the rest of my body. For refresher, my last PET/CT scan showed NED everywhere else besides my brain. Please pray for peace, comfort, and a clear scan on Tuesday. Please pray for efficacy and minimal side effects from adding temodar next week. Please pray for strength and determination to continue this fight. Please pray for Andrea, Landon and Logan that this fight

Life is what you make it so don’t waste a minute sulking. Cry when you need to. Scream when you must. Just don’t forget to smile. Don’t forget to search for that which is good in this life because we only have one shot at doing it right amidst the mountains and valleys in our way. And this one shot is short and delicate. It isn’t always easy, and it certainly isn’t always fun, but it is always worth it. As you constantly and without hesitation always show my family and me, please know you are never alone in life. We are all here for each other.

We love you. Very much.

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4 Responses to Thank You For Your Continued Prayers…..

  1. Cindi Dickey says:

    “As you constantly and without hesitation always show my family and me, please know you are never alone in life.”

    And I will continue to do so. 😀

    “When praying, hoping, and dedicating moments to God and ultimate healing miracles, it is sometimes hard and complicated to see what exactly has been answered. Sometimes it may miss our sights; other times it takes a while to see… It is sometimes hard to align our idea of a miracle with God’s actual miracle. Acceptance in the unknown, faith in God and prayer are essential parts of this equation.”

    I realized this when I was much older than you. That you have this knowledge, and can hold onto it at, what, 32? 33?…is wonderful and it will serve you well in life, Ryan.

    I think the news that a lesion that has proven itself very aggressive in the past is now just showing 1 cm “growth” or edema. I’m very, very encouraged.

    I was praying SO hard last night that the temodar was approved and would be added by Ravi. So hard. I pray that the side effects are minimal, that it works well with the Taxol, and that it attacks those brain lesions and causes them to shrink and, ultimately, gives you God’s healing. I am very busy with two jobs, now, but never, for one moment, doubt how often you are in my thoughts and prayers.

    Sending you so much love, buddy. Feel all of our love around you, Andrea, and those darling boys.

  2. Marcia Thatcher says:

    Ryan, I haven’t met you but I was Andrea’s first grade teacher and have known her family since then. My prayers are with you and your family and will mention your name at my church. I your mri goes well.

  3. Renee Levasseur says:

    Ryan, you and your family are in my prayers every night.

  4. Leann Kirkendall says:

    What a great e mail. Thank you so much! I liked the last part of it so much that I had a
    copy made of it. I just continue to pray for you, Andrea, the boys and your extended
    family. We have also prayed for you in our Bible Study group which meets weekly.
    Thank you for being so positive minded and writing things that make us feel up-lifted.
    May God bless you in this battle!
    We love you,
    Leann

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