Ryan and I just got back from an amazing trip to New York. We visited to see the world premiere of Thank You For Playing, a documentary that was created about our family.
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I’ve had the honor of watching the beautifully crafted film three times now and each time the skillful cinematography and strong editing impress me. For almost two hours, I have my family back and I watch in awe at the love and joy we shared so easily. It makes me miss Joel, but it reminds me that his life still matters, and it was wonderful to see people introduced to him for the first time in this film.
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I wanted to let you all know that you will likely be able to see the film at a film festival near you. You can like the facebook page for continued updates about the schedule of the film. Please encourage friends and family you know in New York to buy a ticket to see the film this Tuesday or Thursday where it is in competition and audience members can vote for the film to win a $25,000 prize. I would love to see the filmmakers celebrated for sharing our story in such a touching tribute to Joel’s life. here are still two more showings, Tuesday at 6:45 pm at the Bow Tie Cinemas Chelsea 5 and Thursday at 5:45 at the Regal Cinemas Battery Park, the Tuesday showing is $21.50 including fees and the Thursday showing is $13.50 including fees. You can purchase tickets to see Thank You For Playing at the Tribeca Film Festival here.
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Next week, the film will show in Toronto at the Hot Docs Festival, then on Tuesday May 5th, at 3:00pm the film will show at the first ever Bentonville Film Festival in Bentonville Arkansas. This Festival also offers a very large audience choice award so anything you can do to help spread the word to friends and family you have in Oklahoma, Arkansas, and Missouri would really help the filmmakers. I believe that anyone you recommend the film to will really appreciate the opportunity to see it (even though I know I’m biased.) Tickets for Bentonville are available here. These tickets are just $8 a piece with a $2 order fee so get a group together and save money on the order fee!
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I think this film is really something special and I hope you’ll help us make sure a lot of people get to enjoy it. A trailer of the film is available on the website (the first link in this post.) Here are a couple photos from Tribeca, the first is Ryan and I with the filmmakers at the Q&A after the world premiere of the film, and the second is Ryan and his business partner Josh giving a talk about the video game.
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Comments

There are 8 comments for this post.

  1. Trevor on June 6, 2015 11:57 am

    Hello Ryan and Amy,

    I don’t really know how to begin a comment like this one. I found out about your Kickstarter project from a friend’s post on Facebook and was intrigued by the premise. After some digging, I realized that while I initially thought I had only discovered an artistic, upcoming indie game, what I had actually discovered was another family whose experience of pain and suffering and hope closely mirrors that of my own.

    In June of 2009, God gave us Karis (Greek for “grace”). She was born completely healthy and had normal Apgar scores. She was our firstborn and only three weeks old when my wife Katie and I answered the call to move to Jackson, MS for me to attend seminary. She smiled, cooed, laughed and met all of the regular developmental milestones until three months old. Around that time, she began to display difficulties feeding. Originally, we assumed this to be a manifestation of acid reflux, and even her pediatrician diagnosed her symptoms as such, prescribing her Prevacid. When the Prevacid did not ameliorate her discomfort however, we knew we were dealing with a more significant health issue. Finally, on the Wednesday before Thanksgiving in 2009, Karis’ doctor admitted her to Batson’s Children Hospital with the much dreaded diagnosis as a “failure to thrive” infant. Thus, our first Thanksgiving in an unfamiliar city with the nearest family 200 miles away was spent in a hospital where specialist after specialist prodded and poked our daughter in an effort to determine the cause of her developmental delay. In spite of what later would be clear as early signs of a neurological condition, my wife and I held on to the belief that Karis’ ailment was only a gastronomical one. And while each physician we saw refused to speculate, the early theories were all bleak and dismal. Then, on December 4th, 2009, we received the worst possible diagnosis: Krabbe disease. Krabbe disease is a genetic, neurological condition that results in the deterioration of the myelin sheath (that which serves to conduct neural signals from the brain to the muscles) and results in death by the age of two. Karis’ geneticist made the prognosis that she would be dead by 13 months. Devastated, we were even further disheartened by the news that this extremely rare genetic disorder is autosomal recessive, meaning that there is a 1 in 4 chance of all our children being born with the disease.

    Distraught and undone, we went home and grieved for Karis and prepared for her death. Immediately, my wife wanted to take down the calligraphic letters of Karis’ name in her nursery and dispose of her scrapbook. We were stuck in a nightmarish limbo–torn between the desperate desire to cherish the little time we were given with our daughter and the fear of making more memories as that would mean more to grieve later on. We prayed out of fear for God to preserve her life. We couldn’t conceive a world in which Karis wasn’t in it.

    Yet over the course of the next few months, our world was one in which Karis was very much in it. Through physical therapy, occupational therapy, and swallow studies with speech therapy, we watched her thrive in spite of the disease progression.When Karis was eleven months, we prayed and wrestled through the uncertainty of her first major surgery for her to receive a nissen fundoplication and G-tube. I watched my wife as she mourned the last vestiges of being able to feed her daughter on her own. By God’s grace, Karis came through that surgery, overcoming the risks of anesthesia.

    As a result of a natural history study we were participating in with UNC-Chapel Hill, the Krabbe research doctor in North Carolina, by God’s providence, happened to discover hydrocephalus (completely unrelated to Krabbe and rarely seen in conjunction with it) during an MRI that was part of that study. We were rushed back to Jackson, MS where Karis had to get emergency brain surgery and received a VP shunt.

    Yet in spite of all the surgeries and hospitalizations, we noticed that God was sustaining Karis and answering our prayers for life. We no longer prayed out of that fear; we now prayed out of a desire to see God glorified and magnified in her and our suffering. Eventually, we discovered that Karis’ days were not charted out by any medical professional or textbook but were known to God alone.

    Today, Karis lives at home with us and receives 16 hour a day nurse care. She has a trach (which was the result of a three month hospitalization in which she coded twice on us and had to be incubated twice, causing us to think that we were finally losing her) and is on a bipap machine continually. A teacher comes in to the home four days a week to work with Karis as well as OT and PT. Through the ebb and flow of her and our lives, we have seen that she is living with Krabbe rather than dying from Krabbe. Regardless of the outcome, God has helped us to see that in a profound sense, we are terminal, and we never know when our last moment will be.

    My wife and I spent the entire morning perusing your website, and we watched the 12 minute video on Joel’s doctor visit and heard your testimonies. It is difficult to express how much your words and your experiences that you related resounded with our own words and experiences. Amy, Katie was nodding and saying, “I have said those exact same words” when you said that God moved you from praying for Joel out of fear of his death to praying for God to be glorified. We identified in the deepest way possible.

    Additionally, as a writer, cinephile, and avid follower of indie video games as a form of emerging art (I love developers such as The Chinese Room, thatgamecompany, etc.), I found it to be so compelling to see you telling your story through such a narrative rich medium as a video game. It was refreshing to see other creative people expressing and telling of their raw pain through such forms. I am an editor of an online literary magazine called The Wolf Skin as well as a writer, and I often grapple with the instinct to write about my own experience but wanting to do so past the, on the one hand, cliches, and, on the other, a sense of despair. I definitely would love to receive updates and provide support to That Dragon, Cancer’s development. Hopefully, we can provide monetary support one day, though right now it isn’t possible since Katie must stay home for Karis, and I work as a meager high school English teacher. :)

    I know that my wife and I would love to foster a relationship with you two (as much of a relationship as can be fostered digitally and long-distance) and to continue a dialogue. My email is: boxtrev@gmail.com and my wife’s email is: katealmy@gmail.com. We will definitely keep praying for you and Joel with great empathy. Thank you for indulging this way-too-long and fumbling message.

    In Christ,
    Trevor Almy

  2. Joshua Griffith on September 10, 2015 12:50 pm

    Hello Ryan & Amy, my wife and I have some dear friends that have a 2 year old with an AT/RT Tumor that we did a Twitch Charity event for with my old Gaming Group “The Grumpy Owls”. On my Birthday in June we did a Minecraft 6 Hour long Livestream and raised just under $1300 for their GoFundMe. I’m by no means a massive YouTuber with only around 150 subscribers, but even seeing the beginning paragraph of the story of The Dragon, Cancer moved me beyond belief. I just wanted you to know that when the game is released I’m going to be doing a Charity Series for him, and was wondering if you also had a link for donations to any charities you would like funds donated to as well. I want to focus on his specific needs, but I would also like to include any sort of Charity that possibly helped you as well. Just let me know if you can. You can reach me at Ixen08@gmail.com Thank you, and I’ll keep you in my prayers.

  3. amyg on September 18, 2015 2:48 pm

    Hi Joshua, I just wanted you to know that I saw your comment, and that I’m so sorry there is a sweet child in your life with an AT/RT. I can’t even express how much I wish they could be completely obliterated from existence. Just thinking about it makes me cry. As a mom, I want you to know what a blessing it is when people like you actively support a family that needs help. Thank you for helping your friends. We are still figuring out how we will connect charities to our game, we have a short list of charities that are meaningful to us, and added to our quality of life when we were struggling, as I’m sure your friends do too. I will be sure to email you in the next month or two as we finalize how we will work alongside charities with That Dragon, Cancer.

  4. Paige Hornback on October 27, 2015 2:27 pm

    Hello Ryan and Amy,
    I just wanted you to know you are on my mind often, I will always remember Joel and the beauty that God created in him. Your family are never forgotten. Joel will never be forgotten. Though Joel’s earthly battle has been fought and surrendered, he is a mark on my heart, and many other lives/hearts forever. Prayers for you on all of you and your sweet boys and Zoe (she is precious!!!)…I just wanted you to know I was thinking of you and praying especially for you this month. <3

  5. alex on November 15, 2015 7:53 am

    Hi,
    Missing the family updates. When are we going to get more of those.

  6. Ruth Buxton on January 6, 2016 2:31 pm

    To the entire family of Joel: May it help you to know that a complete stranger is praying for you all and commends you for sharing your personal story so intimately. You are truly blessed. No one in the world can say they know what you went through and are still going through. I’m saying this to each of you, because you each had your own personal way through this journey. Thank you for the courage and love it took to share this with the world and to not let it define you. May God keep you all in the palm of his hand until you meet Joel again. Hebrews 13:5 “I will never leave you or forsake you.”

  7. Rachel on March 5, 2016 9:43 pm

    Dear Mr.Ryan and Mrs.Amy,
    I love the game, That Dragon Cancer, and I really like Joel Green. Sadly, i, too, knew a baby boy who died from something similar. I’m sharing Joel’s story to my friends. From, Rachel (Feel free to email me)

  8. Christopher Imhof on October 15, 2016 5:32 pm

    Dear Green Family,
    I am so touched by your story. I know words like courage and inspiration have a place here, but overall I am left with depth of love you have, mixed with sharp edges of sadness mixed with hope. I think the game and book are the a most beautiful tribute to your son as well as your family’s journey; possibly one of the most beautiful forms of love I’ve seen in this crazy world. I will keep your app with me always to remind myself of every days’ gift to be able to appreciate love my family.
    Take care and thank you.
    Christopher Imhof
    Denver

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