An Update On Life

Good afternoon and thank you for your continued love, support and prayers. I am extremely sorry about the delay in posting, but it has become increasingly difficult to update during daylight hours with an almost 4 and almost 2 year old running around. My immediate family has been waiting as well. Please forgive me!

It goes without saying, it is a fact and utmost necessity to share one’s plights with others. It not only allows a person to vent, but it also allows for the opportunity to help each other. It is amazing what sharing our lives with all of you does for our journey. We have met and continue to meet so many amazing people.

For those with not much time to read it all, it was an overall positive report. Thank you God for keeping us safe. Thank you God for answering our prayers. Thank you for continuing to allow our trial to be a testimony to your mercy and grace. As with everything in my case, it’s all inconclusive at the moment, but all findings point to a miracle, again. It is important, as always, for us to tread carefully forward. I am planning on doing some very aggressive therapy (immunotherapy – IL2). This scan was vitally important in making that possible. It was the first step of many to get it going.

It’s also important for me to go through my reports for those who are curious. It’s always important to know that lengthy and wordy reports aren’t always bad. We must learn to read between the lines and not be overwhelmed with medical talk. Unfortunately, we all will be touched by unfortunate medical circumstances either personally, or through a loved one. It’s important to prepare for battle years before it happens. I want to help out as much as possible!

Although I wish very much I could say there is nothing present on the scan, it is again not entirely the case. To understand disease and treatment modalities, you have to understand that measurable efficacy takes time to be discerned. With that said, here is the report from the MRI for those who do not have time to listen to me ramble (although you may need to listen to my explanation to understand an MRI – which, I’ll admit, I haven’t a clue what some of it means).

Click here for report: March 10, 2014 Sparrow MRI Radiology Report

Immediately following the scan, I had them make two extra copies so I could overnight the images to both Dr. Tap and Dr. Ravi. USPS tracking says they arrived. Hopefully, we have their opinion soon.

We received the report this morning, and yes, Andrea and I looked at the scans yesterday. We knew there was something present in the same spot, but we wanted to wait for the report to announce anything. Although we knew there would be a remarkable finding, we didn’t know how to interpret the scan comparisons without an experts opinion. There are subtle differences in intensity, tumor appearance and contrast uptake. These differences all seem to point in the direction of tumor death.

The report impression and Dr. Rapson’s opinion are very favorable to a great treatment response. The intensity of the tumor area has decreased- this means it is less obvious as a tumor and more indicative of scar tissue/necrosed tissue. The size has remained relatively the same, but we were told to expect this (inflammation and scar tissue can and does allow a spot to remain similar in size). Radiation takes time to do its job, and it could be months for us to truly know. However, things are looking great. In all honesty, two of the most important factors, especially against a highly aggressive and deadly cancer, are 1.) there are no new lesions identified anywhere 2.) I have been off any treatment for six months now. Those are both big blessings from God in the nature of what is going on.

Going forward, I hope to set in motion the immunotherapy treatment of IL2 that we previously discussed. It’s aggressive and dangerous, but it seems the data point to a very favorable response with my case of angiosarcoma. Many factors have to still align for it to happen, but a very favorable MRI scan was the first step. That has happened, thank God.

Thank you for all of your prayers. Thank you for all of your love and support. Thank you for looking after us. It has been 4.5 years of fighting, 37 rounds of chemo, 2 lung surgeries including the removal of my left lung, 2 recurrences including one in the brain, and radiation treatment. The fight is not over; not by a long shot. You only live once, and you must not lose your will to truly live.

We must lean on each other. We must accept each other for our uniqueness, diversity, passions, and downfalls. We must not judge, ever. Instead, it would be amazing to learn and embrace each other for what we can all bring to the table. We can learn a lot from each other if you approach every situation, every encounter, and every engagement with the mindset of enhancing your life by learning from anothers uniqueness and perspective instead of defensively trying to force upon the world your opinion; with the mindset of knowledge instead of judgment; with the mindset to collaborate and expand upon your world by using the experience and beautiful life of someone else.

Thank you for trusting me and allowing us to share our amazing life. Thank you for sharing you. And thank you for always looking after each other. I love this life, and everyone in it. We have a long road, but it is one where we can learn to navigate and traverse blindly, hand-in-hand, as long as we always have each other and God.

May God bless your lives, as he has ours. I love you.

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7 Responses to An Update On Life

  1. Cindi Dickey says:

    “We must lean on each other. We must accept each other for our uniqueness, diversity, passions, and downfalls. We must not judge, ever. Instead, it would be amazing to learn and embrace each other for what we can all bring to the table. We can learn a lot from each other if you approach every situation, every encounter, and every engagement with the mindset of enhancing your life by learning from another’s uniqueness and perspective instead of defensively trying to force upon the world your opinion; with the mindset of knowledge instead of judgment; with the mindset to collaborate and expand upon your world by using the experience and beautiful life of someone else.”

    Thank you for this, especially. I feel so blessed to have come to know you and your family. I will continue to pray for everything to work out for the immunotherapy. It’s dangerous, yes, but you’re RYAN. It’ll all be okay. I just know it. *hugs*

  2. Renee Levasseur says:

    You have gone through so much. This news sounds so good to me. I will continue to pray for you every single night. God is not finished with you…you are witnessing to so many people. I received a card in 1990 from Nancy Holden…which I can only think would be your grandmother…she wrote me a beautiful card which I still keep in my Bible to this day. She told me to hang on to 1Peter 1:6. I read it all the time. Your grandmother’s words of faith and kindness to me in that card are very dear to me. She too, has the gift of writing….like you. I’m not good with putting on paper what is in my heart and what I am trying to say. May God continue to work his miracles on You.

  3. Lea Hulshof says:

    another wonderful page to be added to your book”"” I praise God along with you and others for the good news. We bring a sigh of relief along with you now to breathe much easier… You have been our encourager, leader, teacher, putting us before you, N so much more.. Your love has spread to many people to help get thru this ASC journey….we have learned to love and support many people we never meet. Now they are our friends and ones to LEAN on… God will continue to be with you and your family.Thank you again, Ryan for your love and helping us thru these difficult times.. love N hugs to you and family…. Lea

  4. Leann Kirkendall says:

    Thank you for giving us the information. I wish that I knew more so that I could
    understand more. Like I always say, I plan to just keep on praying for you and Andi.

    There was once a lady that lived down the street from us and she would nearly
    always end her newspaper column with these words…”God loves you and so do we.”
    Those are my sentiments exactly.
    God loves you and so do we,
    Leann

  5. Kristin VanZanten says:

    You’re amazing! I’m so blessed to read your updates, and I continue to pray for God’s blessing on your treatment.

  6. Renee Levasseur says:

    Ryan…I was reading the Bible this morning and found a few scriptures that I had told you about. Read Romans 5:1-5 and Romans 8:18. I pray that today leaves you and your wonderful family in God’s Loving Arms.

  7. Cindy says:

    Always praying for you!! I am always pleased to see when others give glory to God. Without God there is no life and this disease would truly destroy all of us. With God we know there is a greater purpose and we must proclaim his Joy he has promised us. As I ‘said’, I continue to pray….Cindy (Kaleb’s mom)

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