Health Update / Going Forward

Good afternoon everyone! May this day bring nothing but joy, happiness, and peace to your lives. May you enjoy each day to the fullest extent possible. Life will not always be easy. It will not always go the way you want it to, but you adapt. You learn to alter course, roll with the punches, accept what you have been dealt, and chart a new path. You cope and give it your all. You set an example for those around you, but rely on those around you when you need them most. It’s a cycle, but a very important cycle. Life will have it’s ups and it’s downs. It is important to have both in order to experience life.

Before I go into what we learned today, I must strongly reiterate the odds we are fighting against. Truth be told, we are fighting against statistics, but the statistics can be old and outdated. However, they are relevant to a certain extent. This disease is aggressive. It functions in very different ways than normal cancer. It spreads easily and, unfortunately, kills quickly. It is the most daunting and scariest information to read, but the words I read when researching are always motivators for me. I always tell myself statistics are meant to be broken, and someone has to define both sides of the average. I choose to define the far right side, increasing the median overall survival (currently at 13 months) and increasing the median progression free survival period (currently at 4-5 months).

Thankfully, we are doing just that. We learned today the tumor has shrunk once again (20% decrease on a two-dimensional scale). We have defeated the odds within the durability of this chemo against this cancer. We have shrunken the tumor by roughly 60% since initial diagnosis in March. We have witnessed no further metastasis. We have endured 10 rounds of chemo, a few setbacks, many tears, but a life filled with memories, laughter, and love. We are up against a very difficult disease, but, by the grace of God, we are currently winning the fight.

However, as excited and relieved we are today, it’s essential to remain humble and respect what we are up against. It is not a game, nor is it over, but we are moving in the right direction. It is without doubt God is answering our prayers. It is without doubt all of you, with your continued out pour of support, care, and love for my family, despite how busy your lives become, have provided hope, strength, courage, determination, and love of unprecedented levels.

You take care of my wife and my children. You look after us spiritually, emotionally, and physically. Near or far, you have offered to help in a moment’s notice. I am not the remarkable or inspirational one. To know who that is, look in a mirror and smile. It is all of you who inspire me. You inspire me in ways I have never thought possible.

We discussed many topics in today’s consultation. We went over different chemo regimens, trial drugs, radiation, surgery, and research. Dr. Ravi is a very passionate and intelligent man. He absolutely loves what he does and it shows through his conversations with us. He is a very strong advocate for angiosarcomas. In fact, one of the most exciting items from the day’s discussion was the fact that angiosarcomas, despite their rarity, were chosen as 1 of 5 sarcomas to be studied extensively on the genomic level in the upcoming year. The tumors are to be genetically sequenced and studied on a very finite level. To know what kind of breakthrough this is, you have to know that sarcomas, and especially angiosarcomas, are drastically overlooked, underfunded, and under researched. The data and numbers just aren’t there for large and small corporations to financially undertake such a small piece of the pie. This is all very exciting for those fighting rare cancers.

As for our plan looking forward, we are to do two more rounds of the current chemo regimen with Round XI starting Monday, December 24. As always, we will re-evaluate and re-stage in six weeks. Definitive treatments (as chemo cannot be used forever, these are treatments to attempt to fully eradicate the disease) were brought up today and are very difficult in deciding. Surgery is one route and involves a very risky and highly invasive surgery. It requires a left complete pneumonectomy (complete removal of my left lung). Unfortunately, the tumors are located in the mediastinum (middle of the chest), and the area is very difficult to operate on. The other option is radiation; more specifically, proton therapy. This can be very effective if the tumor responds. However, with radiation, there is always the uncertainty (as there is with surgery) that cancer cells are left to progress on the microscopic scale. These are the tough decisions we face, but, in light of today’s excellent news, we will not think about them for a while and enjoy bringing in the new year!

The future is always uncertain. I trust we have all learned this very simple, but often over looked statement. We cannot plan the future. We can plan what we want to happen, but we cannot plan what will happen. If we could, it would not be called living life. We could not learn from mistakes or grow from tragedies. We would not be surprised by the unexpected or excited in ways we could have never imagined. We have all heard the phrase expect the unexpected, and I could not agree more. Once you relinquish the idea you have the ability control the future, you begin to see life in a whole new light. You enjoy what once was in the way of your plans. You see the world as a peaceful and enjoyable place on a minute by minute basis instead of worrying what will happen weeks, months, or years from now.

Enjoy your life as it was intended. Enjoy it with your eyes and mind wide open; free of distractions as much as possible and the ability to understand you will face obstacles, tragedies and disappointments. However, face them with strength, patience and determination. Face them with hope and love, and do not isolate yourself. There is a lot to say in regards to the power of teamwork and a support network. Everyone has something to offer, and I do mean everyone! From people sending me a single sentence only once, to those I hear from on a daily basis, everything helps us get through this.

I am not beating and fighting this disease. WE are. In no way do I contribute the positive progress against this disease to myself alone. I would not be here were it not for all of you, which includes our entire support system of friends and family. I think about you often, and I thank God he has brought you all into our lives. Many pieces have fallen into place surrounding this fight. Many stresses have been relieved because of the support and help we get. Thanking you all consistently never seems enough to me. I never seem to be able to convey just how much bringing you on this journey helps us. It’s an emotion and calmness of mind that can never be explained. Please know that your support is kept at the very core of my being. It is cherished, respected and needed on a very deep level.

I am so very happy to share such exciting news with you, again. Thank God for answering our prayers, and for the life he has given me through the years. Without the life I have lead, I would not have met you all one way or another. It’s amazing looking back and seeing the miracles that have unfolded to get us to today. We have many more days of fighting, but we can do it. We can beat this thing together. I have a stronger passion than ever to help out in any way I can; to advocate for others; to raise funds for research; to teach and instill hope, courage and determination.

Thank you for allowing me to share my life with you. Thank you for sharing in our joys and sorrows; thank you for letting us be a part of your lives too. Please, have an absolutely wonderful holiday season. Bring in the new year with the notion you are never alone and always thought about. It’s a great day. We love you all so very much. πŸ™‚

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15 Responses to Health Update / Going Forward

  1. Rachel says:

    AMEN!! I am thanking God as I read this, Have a very Blessed and Merry CHRISTmas.. <3

  2. Katie W says:

    Yay!!! Glad you got such great news! Tis the season for miracles and ur making those happen! What better way to head into Xmas?? Enjoy, which I know you will!!

  3. Laura says:

    Excellent news and just in time to celebrate the holidays!! Keep up the hard work and positive attitude. Have a very Merry Christmas!!

  4. Kathy says:

    I am so Happy for You! You and your family are an inspiration to everyone you come in contact with. Hugs and Kisses, Love Kathy and Vern

  5. Briana Kunisch says:

    Amazing news, Ryan! After reading this I wish I lived just around the corner so I could rush over and give you a big hug. It is so unbelievable to me how you have kept such an amazing attitude through everything. I also can’t believe how your reflections on life speak right to me. I imagine you and your writing are helping your friends and family as much as they are helping you. Have a wonderful Chrismtas!!

  6. Barb says:

    Ryan, you continue to amaze and inspire me. Thank you for always taking the time to put into words your positive attitude. I am uplifted every single time I read what you have written. You are fighting the good fight and succeeding so far. That is so awesome. Of all the new people who have crossed my path this year, I am so thankful to have met your family. You, Andrea, Landon and Logan are so special. May God Bless you and keep you during this holiday season. I wish you a VERY Merry Christmas and continued good news and good health in the New Year. xxxooo Barb & Family

  7. Ann Tibbe says:

    Merry Christmas Ryan. Always thinking of you and your family.

    Ann

  8. Leann says:

    Praise to God!!! Good news is so wonderful!

    We’ll just keep those prayers being said at our house!

    Love you and yours,
    Leann

  9. Lisa Goich-Andreadis says:

    Ryan, what wonderful news for you and your family to receive before Christmas. I’m sending you continued love and support and a Christmas stocking full of good wishes for the coming year. I’m so happy to have made your acquaintance this year. You’re really an incredible young man. Merry Christmas! Happy New Year! And keep up the good fight. We’re all behind you! πŸ™‚ Lisa

  10. Emmylynn C says:

    Ryan,

    This is such wonderful news! What a great way to kick off the holidays! The prayers never stopped… and I continue to think about you and your family on a daily basis. God bless you and your family… and have a wonderful Christmas & New Year!!

    Love,
    Emmy

  11. Grandpa Humphrey and Grandma Humphrey says:

    Great news Ryan. We continue to pray for you and your family.
    Keep the faith and keep fighting. You are a great insperation to everyone.
    Have a great Christmas.
    Love
    Grandma and Grandpa Hump

  12. Tami Mann says:

    This is great news! It just goes to show God does answer prayer and I will continue to be praying for you! Have a great Christmas and New Year!

  13. Grandma and Grandpa Davis says:

    Dear Ryan,
    We are so thankful to God for working through your doctors and treatments. Continue to put your faith and trust in God. Psalm 34: 4 I sought The Lord, and He answered me, And delivered me from all my fears.
    We are praying for you! We love you.

  14. Jeff Stepek says:

    HOPE you & your family have a wonderful, peaceful Christmas Ryan. Thank you for sharing your inspirational lifes journey with us all. You bring Hope, appreciation, love & so much more to so many with your writings. Take care. Be well.
    A distant cousin.
    Jeff Stepek

  15. Christine says:

    So glad to hear the good news so far. Thank you for being such an inspiration to all who read your blogs or know you personally. Praying for continued good health and news for you and your family, Ryan. God bless.

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