Talking to the kids about death

Lets get the good news out of the way: brain scans are good and clear.

While conversing with my doc about the brain scans we went ahead and asked her a few more pointed questions…and essentially here’s where we’re at.

My time is short. The moment that Jess and I have talked about in theory is now on us where we’ve got to live as if I only have a few months left…because unless some drastic healing happens (which is ALWAYS possible) I only have a few months left.

It hurts to think about.

Even more painful, however, was to talk with our children about it today. We all sat on the bed, the same bed that we sat on nine months ago when we told them that I had cancer, and told my children straight up that their daddy was dying. Mom, dad, and India sobbed. Jones attempted to understand it. India simply said “daddy I don’t want you to go” and then she curled up in Jess’ lap and cried with us for about twenty minutes. Jones’s first response was to yell “No!” with quite a bit of emotion only to be followed up with a really interesting and clear decision to not be emotional about the matter. He wanted to talk about heaven, about cremation, and about my new cancer treatment. He drew pictures of me being buried, of me ascending to heaven, of my new home in heaven, etc. He wanted to know if he could bury me with some of his Legos; he had lots of random (and funny) thoughts. Eventually he and India transitioned into caretaker mode. They picked every flower that they could to give to me, they created a prayer space in our backyard to pray for me, and they did sweet things like getting me water and snacks. Jones even offered to take over Grassroots Conspiracy for me (he also suggested that Jess remarry). Here are some quotes from along the way:

  • “Dad, do you want your scull and dead body to be burned up or buried?”- Jones
  • “Just about an hour ago I was cursing cancer. I was saying things like ‘stupid cancer, I hate cancer’ these were the words I was using to curse cancer…But what if I said ‘you stupid fuck cancer?’ I mean, i wouldn’t say that ’cause it’s bad because it’s combining two bad words ‘fuck’ and ‘stupid’…but, you know, it’s just how I feel.” -Jones
  • “Which graveyard is daddy going to be buried in?” -Jones
  • “Dad, have you made out a last will and testament yet? Because I’m wondering who you’re giving your Nook to. Because…I like to read…and it kind of fits me.” -Jones
  • “I’m going to miss you dad when you’re in heaven.” -India
  • (after drawing a picture of me in heaven with God she then drew a picture of me with a penis…and then said…) “Well I sure knew that would cheer you up! I think myself so cute and cheerful!” – India

The rhythm that this cancer seems to have owned both before and after surgery, before and after radiation, daily chemo, and now monthly stronger chemo is to have a month or so of rapid growth followed by three or so months of inactivity and stability. If this pattern continues then we can anticipate that we’ve got about three to four months of stability where we’re at and come August there will be a period of new tumor growth. The major problem now is that there’s very little space for my tumor to grow anymore! There’s very little left in my central nervous system to be taken over by cancer besides my brain and the continued strangulation of my spinal cord. So new growth essentially implies death or complete paralysis.*

There’s still hope, there’s always hope. The next set of drugs that we’ll most likely try isn’t some bottom of the line last ditch effort–it’s a good option that has a decent success rate. Additionally we’re continuing our constant work with an amazing naturopath, dietary stuff, and all that jazz. There’s always hope.

But (and yes, there is a but). But it has come to that time where we have got to adjust our life to the new reality (always hoping that this reality is not what comes to pass). When you’ve only got six months to live what do you do? Who do you spend time with? How do you spend your money? How does one leave a legacy behind? What things do I need to stop doing? What things do I need to start doing? Ahh, so many questions! And, honestly, all I can think about is how few memories I have of when I was four years old. Will my daughter even remember me? The need to both create memories and to spend time chronicling stories and thoughts via letters, videos, etc. seems to be of the utmost importance.

Anyway, at this point I can see that I’m rambling. I obviously have so many thoughts that I’m  trying to understand and I’m using you as a way to process through them. Thank you for that gift.

Again, there’s no good end to this blog. It is what it is. I do not grieve for myself–I have full confidence that I’m off to bigger and better things with the man upstairs. But I grieve painfully for and with my family. This sucks. And while we all knew that this would/could be a part of our story…I don’t think we could have ever imagined what it actually feels like to be here in this moment…and it…well…it’s no good. Keep my family in your thoughts and prayers.

 

* Much of this paragraph comes from Jess and my assessment. The doctor’s simple response was that time was very short and as an extension of that she adamantly said that we needed to move our family Disneyland trip up from June to…as soon as possible.

72 thoughts on “Talking to the kids about death

  1. Shit! You have got to be one of the top 10 families I know! I am angry with God, and saddened with the hope of the perfect relationship going wrong. I want you to know that I have viewed you two as the perfect fit, and the top 10 of peeps who inspire me… DAMN It ! You and your family have been an inspiration to so many people! Jess and Ryan, if I can assist in any way at any time , please call on me! 360.903.9962 cell # 3060.992.2042 work # My heart to all of you! Billie

  2. Your families courage is amazing. I have specific memories of me and my father going back to when I was only 1 year old. You obviously have a strong relationship with your kids and they will have memories of being with you even though they were only 4 years old. I have no doubt about that. Continued prayers that there will be time for more memories beyond that….

  3. I thank you for your sharing your courage and your faith. You are an inspiration to me and your honesty and transparency refresh and convict me. mt 25:23

  4. ryan my heart breaks for you and your family. your faith is beautiful and i am so grateful it can sustain you guys through this wretched time…. cos it surely is. I try but simply CANNOT fathom having this conversation with my children. i am weeping for you all xx much love, kate (aim)

  5. Your kids will remember you for the compassionate loving Dad your being, your leaving a legacy of a selfless and pure love. Every time I read your blog I see Christ through you and its beautiful. Thank you Ryan for this gift you have given all of us. You truly are a genuine follower of Christ. Praying for you and Jess and the kids.

  6. Heartbreaking to hear and read. Unimaginable on so many levels- I know you have probably done everything ever recommended to you by the doctors but please look up Charlotte Gerson. She has a treatment facility in Mexico where they have cured thousands of people simply through detox and entire body cleansing . I know time is of the essence and there is fear all around you, but please look into it. I know you have a lot on your plate (to a degree that no one but you and your family could ever know). I am praying for you and sending love to you and your beautiful family. God heals. Do not be afraid- do not let fear rule your decisions. Walk on in his peace.

  7. Have you heard of Solomon Wickey, the famous Amish healer? He has helped many from all around the world. He is still seeing people and can be contacted via his assistant David who arranges his appointments. David can be contacted at:

    MASSAGERUS@aol.com

    Solomon Wickey's address is:

    6308 Country Road 43…Auburn, Indiana 46706
    USA

  8. This post made me weep, laugh, weep, laugh then weep while laughing. Thanks for being so courageous in letting us into where you are in your journey. Praying for radical healing and that whatever you decide to do will be epically (word?) great.

  9. Wow.

    I found your blog through my friend Kate Jennings in Australia. I am a blogger friend of hers.

    My heart breaks that your family had to have that conversation with your children and although I very much hope you recieve your miracle, I think your children will be very grateful that you spent this time being real with them. My husbands father died of lung cancer when my husband was 10 years old and his parents never spoke to him in such a way to give him time to process what was going to happen. In a way, I think he is still processing it and not in a healthy way, with very few memories or talk of his father. I can see that this won't happen for your children and your family. I think that is the best gift you can give them.

    If I can be so bold as what to spend you money on… hire a photographer/videographer for your trip to disneyland or for a few days at home. Let them capture your family as it is, full of love and life. I know my husband wishes he had more photographs and video of him and his father together. More memories that he could look back on. And this blog, that will be read and re-read by your children a million times over I am sure.

    Wishing you much love and healing,_
    Andrea

  10. I think God sometimes claims his favorites a little sooner than others. Your children will grow up with a strong sense that heaven is for real and you are waiting for them there to be united for not a few years but eternity. It has been my experience that dawn follows the darkest night and rainbows the storm. You and your family will be blessed for your faithfulness as you endure this tragedy.

  11. I am good friends to The Thomas Family (Johno and Dawnette) and they posted this. As I started reading it, I too became angry with God, angry that he has put you and your family through this, angry that it has affected my friends and angry that so many great people are burdened with horrible cancer. Then I remembered that God is good, God is GREAT! I believe in miracles, I believe that he answers prayers and I hope you know that you will definitely be in mine. God bless you and your wife, your two beautiful children and the wonderful life you have created with them. I will spread the word and encourages prayers. Enjoy Disneyland, what an amazing memory to make with your children :)

  12. This does suck. I am in prayer that it won't be fast, but that it won't be painful either. I am praying that your children catch a memory of you that lives with them. I am praying for strength for your wife, for your kids, your family, and for you as you go through this. Blessings

  13. I don't know you but a mutual friend posted your blog. I am praying for you and your family. I am a nurse and I bless you for the way you are talking openly with your kids about the future. You mention making it a priority to write and chronicle for your children's sake. I encourage you so much in that. I have experienced where a loved one was so intent on doing all the last resort "Mexico" Treatments, etc, to try to get better that she had no time or energy left to say goodbyes. And I have seen someone else do what you are doing….talking lots with her kids, writing farewell letters to them….and if I ever receive such a diagnosis, I hope I would choose the latter response. God bless you and keep you and give you strength and wisdom for the days ahead.

  14. I learned of this blog through a friend of mine, and I am in awe. You may not think you are strong and amazing, but I do. Keeping you and your family in my thoughts. <3

  15. I saw your blog on facebook and I have to let you know that this is just what I needed to hear. A year ago I lost my father to cancer as a freshman in college. His battle sounds similar to yours but being able to hear what his thoughts may have been or his concerns for us just makes me remember how much my father cared about me and loved me and I needed that reminder during this process of grieving. As for your kids I don't know how much they will remember but for me some of my favorite memories of my father are of when I were really small. Thank you Lord for such a loving father.

  16. Hello Ryan and Jessica – My mother-in-law Kay Koontz forwarded your emergency prayer update to us and many members of our church tonight. Not sure what to say except that you and your family are in our prayers and thank you for sharing your thoughts and experience so candidly. Your honesty and faith is an inspiration. I pray that you and your family will feel His loving arms holding you all close together as you face this journey.

    I read Lamentations 3 (NIV and The Message) this morning. 3:22-24 in MSG reads: God's loyal love couldn't have run out, his merciful love couldn't have dried up. They're created new every morning. How great your faithfulness! I'm sticking with God (I say it over and over). He's all I've got left.

  17. Saw your blog posted on facebook as well, and I'm so encouraged by your honesty. Giving your kids the right to process through this with you, rather than keeping it from them to "protect" them… I applaud you, sir. "Lord, heap your blessing on this family. Touch this man with your healing power, and continue to strengthen him as you direct his steps on this journey."

  18. I am crying as I read this and promise to lift your children and your wife up to God. I had just gotten back from a school trip to Busch Gardens when my parents took my brother and I outside to tell us the news that we had finally gotten a diagnosis and my dad was going to die. That was almost 19 years ago. Over the years I have been sad and confused, mad at God and my Dad, sad for my mom and all we missed…but watching him face death with an attitude much like yours, has always remained with me. To the end, he praised God even as he didn't want to leave us and was angry too…He trusted in God. My dad lived for 3 years after that day until ALS took his life. But he wrote my brother and I letters during that time that I treasure and left with me a legacy of hope and trust in someone greater than me and greater than my pain. An assurance that God is in control even when I felt so out of control and that I always have my heavenly father, even after my daddy was gone. I didn't always understand it and didn't always believe it. But my Dad believed and as I have grown, I have found my own faith. I may not remember every time I spent with my dad but he made sure I remembered the most important thing and he made sure I saw God through his own actions….YOU are an amazing, amazing follower of God and I know your children will remember that about you whether this cancer takes you now or whether a wonderful miracle happens and you are healed…you have been such a blessing to so many of us just by allowing us to share in your story.

  19. What an amazing legacy just these notes are to your children. What an amazing example of the heavenly Father. I don't know you, but I admire your love for Jesus and your family and others. Go to Disneyland, leave all the notes and stories you can and let us all lift up you and your wife and children in our prayers.

  20. Ryan,
    My heart breaks for what you and your family are going through. I appreciate your postings and how they all us — at least in some small way — to go on this difficult journey with you. I have been and will continue praying for you all.

  21. Ryan,
    I do not even know you, just got your link to pray for you and your family. My very best friend is going through this with her husband and two little girls, but God can make this situation the best that it can be, with healing or with out. I know He does not want to take you away from your family! I pray for a miracle for you, either through the Dr.s or just a flat out unexplained healing. I just wanted you to know that I will share this with my friends and that we will all be praying for you. Also, I have very good memories of when I was very young, around 2 or 3 and remember a lot about kindergarden, and we are so blessed to have this technology to record!

  22. Ryan- Im sorry to hear this news. I have not seen you much over the years but have a distinct memory of this young kid running around the church parking lot while I was a teenager in your dad's youth group. My impression of you was that you were a different cat with alot going on upstairs, I see that has blossomed even more over the years. I cannot possibly relate to what you are going thru. The closest I can manage is my mom passing and you know what a great woman she was and how devastating it was and still is. I am proud of the way you are facing this, which is essentially like a man in the very best way. Men cry. Men have fear, sometimes no answers. But in the end they face it and have the courage to be honest with their loved ones about the predicament. Your children will respect that as they grow older. I wouldnt worry about your legacy trust me its already been established and you have accomplished so many of the only truly important things in life: finding your faith, loving unconditionally, being a good parent, honoring your own parents. The truth is Ryan life is a party none of us want to end but it has to end and for some of us, too soon. I had 30 plus years with my Mom but it wasnt enough I wanted more. You deserve to want more as do your kids and wife and even if you get another 20 years that will be too soon. I am a firm believer that the best are taken from us too soon- no question. The rest of us grieve initially, maybe even always, but in the reflection over time and perspective that comes with that are rewarded with years of incredible memories of our time with those bright lights that made our corner of the world so much better. No real advice except that there IS a silver lining I promise you somewhere. May not even be revealed yet but when it is question it from every angle so that you can trust and embrace it and then defend it 100%. Its the only thing that has brought me peace about my mom. Oh and someone on the comments suggested lots of pics. I would second that too probably. I dont think you can overdo something like that. Your courage is inspiring, your realistic approach is admirable and I love that you keep using the word hope which is one of the greatest words in the world. Keep hoping Ryan I will too and a miracle is only a miracle to us for God its another day at the office- it can happen. God bless your parents and your wife and your kids and give you strength brother. Thank you for sharing this very real, very intimate huge piece of your life with us.

  23. I thank you from the bottom of my heart Ryan and Jess, for the way you have shared this most profound and unbelievable journey with such transparency and with such grace. Your family is such an inspiration to so many….No matter what happens, your children will carry with them all their lives, your boundless love. You both are etching into their souls the meaning of, love, grace, community, faith and a host of other life lessons that will live on forever. What a tremendous gift from you, to your children and to us. My thanks and prayers are with you, Jess, India and Jones.

  24. Hi Ryan, you don’t know me. I’m Dottie Woods’ sister. I am praying that God will reconsider, like he did with King Hezekiah. (2 Kings 20) and give you more time.
    I appreciate that you can express your thoughts and feeling so well. I truly believe our God is strong enough to handle our anger and accept it.

  25. I am so sorry to read this. My heart breaks for you wife and children. It sounds like they will lose a wonderful man. I love that you are facing it all head on. My Aunt had cancer and she did not. She refused to even think about the fact that she may die, and now that she has our family, and most importantly her boyfriend and her children are left to try to figure out and carry out her wishes. Please take the time to make a legal will, plan for what will happen when you leave this world and tell those you love how much you love them, maybe write them each something special that they can keep close to their heart and tons of pictures, visits, and memories.

  26. My tears overflow. I am praying for your sweet family. I pray for a miracle but know that God doesn't make those possible for everyone. His perfect plan you may not see, but I know your children and wife will. You have already made a positive impact on others with this blog and your faith. Praying for you, your wife and children.

  27. As for you 4 year old remembering you… i think that since you are having these conversations with the children and because something tragic and heartwrenching may happen to their daddy I am sure that they will cling to their memories of you and continue to think about them so often that they will be ingrained in their heads. At some point they may turn into a memory of the memory, but never will they just be lost. They will remember, especially through the videos, letters, and pictures you will leave behind. I will be praying for you and your family, for healing, miracles, strength and courage, and above all peace that transcends all understanding. Thank you for sharing your journey.

  28. If nothing else I can always count on you to make me laugh Ryan! Despite the tears and the heart aches, there is always hope. Indie and Jones area wonderful kids. Make the most of your time with Jess and the kids. I will continue to pray for peace and healing!

  29. And I am convinced that nothing can ever separate us from God's love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God's love. — Romans 8:38

  30. Well, About a week ago I saw your story posted by a mutual friend on FB. I was heartbroken. But the more I read, the more inspired you made me feel. I am not a Christian – I am not…anything. I gave up that life many years ago because of things like this happening to good people. I felt confused and helpless watching.
    You have inspired me by staying faithful to your religion and your god. It is so inspiring to see that your legacy is one of kindness and hope – not bitterness and regret. You seem like a beautiful person and your family – well, they are so brave. You, sir, are brave.
    Thank you for sharing your story. Thank you for being so candid with your emotions. Thank you for being an inspiration.

    You deserve good things. And your family will always know that – way after this lifetime.
    Keep your head up and keep making memories.

  31. May this as all things in our lives,…now and when all is completed for you in this earthly tent "Be for God's glory".

  32. I'm using this post in my High School class this Sunday. I know your family and the things they have done for the cause but brother you are the strongest man I have ever read. I can't wait to have you over for ice tea in my crib up there.

  33. Ryan, You and your family have been in prayers from the beginning. Ben and my mom, as well as your blog, has kept me update. Words are hard to say but know that your family will always remember you for the amazing man that you are! Your children are blessed to have you as a father and what a wonderful example you are to them! I will continue to pray for you and your entire family and know that God has you and your family in His hands. Live every moment and love every chance you get!

  34. In the back of my mind the song Break my Heart O God is running — This fulfills that prayer. I continue to pray for your family and try to recount the joys of heaven — albeit we continue to struggle letting go of you and the comforts of what we know on earth! Kyle Dugan taught me years ago breath prayers — Lord Jesus Christ have mercy on Ryan indeed.

  35. A facebook friend posted a link to this so we could all be praying. I'd like to mention that there is a fantastic organization I volunteer with called The Dougy Center. The have grief support groups for kids. Many of the kids have had a parent die, and it has been amazing to see even the youngest of children feel as though they have a safe space together. I wish I had a group to attend at the Dougy Center after the death of my sister. Encourage your wife to look into the group- it's completely free and incredibly life changing. http://www.dougy.org/

  36. We love you and are so proud of you and your family. This is miserable to watch and I imagine, hell to walk through. I can't make sense of it, but I do know I've never seen anyone handle something this difficult so well. You are truly inspiring and we want to help in any way we can. I know there isn't really any way to help, because none of us can change what's happening, but we're here and will be no matter what.

  37. I've been following your story for a while through Ben and Jen and other mutual friends. I just wanted you to know you have been and still are in my prayers. I appreciate you sharing your feelings. I am trying to grasp what it is to face what you are facing, but know I can't fully see. God has given me glimpses in the past year. I won't burden you with the details, but 3 close family members died of or announced the presence of cancer within the past year. In November I had a brush with death in a cycling accident. Needless to say, God got my attention. I appreciate your candor. I hope I can learn at a deeper level what this life is all about. I have a sneaking suspicion that our main purpose here has something to do with the next life.
    God shared with me a small bit of inspiration through a photo I took last Fall, just after my brother-in-law died. Check it out if you want to. http://www.imageidaho.com/redfishmoon.html I am still rolling all these thoughts around in my head – with yours added in the mix – hoping for understanding. Please know you are in my thoughts and prayers. Monty

  38. I wish you had known my sister. She passed away on Jan. 5th of this year. She had the same intesity to live, even though she was battling stage 4 colon cancer. She put a brave and worthy battle lasting 4 years with a cancer that should have killed her sooner. She sought treatment even when there was no treatment to be found, she had faith and hope til the very last breath she took. She too had little ones and she said she would do anything just to see them grow up just like you are doing. Please do not give up on hope and faith, they are wonderous. The day before she died she had a lucid moment and kept repeating the same thing "Our God is an awesome God." even when she knew she was not going to make it she still had faith. Keep your faith, hope and take that one last amazing trip to Disneyland and give your family a happy moment during this sad time. God be with you and your family.

  39. Thank you for sharing such a personal and difficult time. We will be cheering you on in this chapter of your life. When the time comes, I hope I have as wonderful an attitude as you and your family.

  40. Ryan, learning of your story from Lance and
    Amy Jo, here in Chattanooga. Praying for you and your
    family. We love you. Amy Ottman

  41. If you guys need to stop in bay area (sf) on the way to disneyland….you can stay with us…I have 4 kids your kids would have a blast. I know I don't know you but you are my brother . I do know brandy though. ….my prayers are with you.

  42. I learned about your story through a friend on Facebook. I just watched a documentary called " Burzynski." He runs a treatment center in Houston, Texas and has had incredible results with something called Antineoplaston therapy. http://www.burzynskiclinic.com/

    The documentary is available to stream via Netflix. He is amazing and it's a maddening story to watch….the FDA should be ashamed. Be that as it may, perhaps it's something that might help you.

    I will pray for you and your family. Your story has touched my heart so deeply. I lost my mother to pancreatic cancer when I was a teen…..she was only 46 years old. Best – – Deb

  43. Ryan and Jess…you two are creating a legacy for your kids that will be powerful. And not just your kids, my friends. All of us, too. There just aren't many words to say that don't sound cliche at the moment. You two are a great team, with ripples of your influence that will carry on for a long, long time. It is an honor to be your partners. Scott

  44. Losing someone is so very hard. I know this, because of the losses I've felt. But giving thought to your loved ones losing you? I did that recently as well. When the doc said I had kidney cancer, I was a bit surprised. I wasn't scared. You can say my reaction was more along the lines of relief. I thought that my Sentence was done. I get my release date. They treated me successfully, and the event passed. Then, I lost my Grandson. Seeing my Daughter devastated was like a bat upside the head. I know that her Son and I have been the most loved men in her heart. What will it do to her if she lost me too? I'm looking at the world a bit differently these days. I'm doing my best to get my Daughter through Gabriels loss. I think I've wasted most of my life taking Life for granted. For all of my loved ones… I will live every day loving the Life that has been given to me. I will give everyone a few great memories of me and fill my Family's hearts with Love. You are a good man. I wish the best for you and your Family. You will live on in the many ways you've touch your wife and children. What you've given them, they will in turn pass to their children. You will live forever, my friend.

  45. Pingback: Heroes of the Faith-Ryan Woods « Reeses in Thailand

  46. Hello there,
    I saw your story on my cousin's facebook page. Just wondering if you have by chance seen the Burzynski movie. It is a documentary about a Dr. who treats terminally ill patients with a better treatment than chemo/radiation with no side effects. If you haven't seen it I highly recommend it. Here is the link for you. It is streaming on Netflix right now on instant play. If you don't have Netflix, I would be more than happy to give you my log in info so that you can view it. I pray for you and your family during this difficult time. May God heal you or help you find your miracle cure.
    http://www.burzynskimovie.com/

  47. There is a herb called Paw Paw. It is specific for shrinking tumors. You can get it through Nature's Sunshine. Just putting it out there! Miracles do happen and I have faith for you. God bless you and your family.

  48. Your families courage is amazing. I had just gotten back from a school trip to Busch Gardens when my parents took my brother and I outside to tell us the news that we had finally gotten a diagnosis and my dad was going to die. The rest of us grieve initially, maybe even always, but in the reflection over time and perspective that comes with that are rewarded with years of incredible memories of our time with those bright lights that made our corner of the world so much better. Thank you very much.

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  50. Great post. Thank you very very much.This article is efficient. Thank you for sharing it with us. I am visiting this blog on a daily basis and I am finding so much helpful article each time. Keep working on this and thank you once again.

  51. Your families courage is amazing. I have specific memories of me and my father going back to when I was only 1 year old. You obviously have a strong relationship with your kids.It's looking so nice. And the overall nice article.

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