An Update: Almost Home

It's been nearly six weeks since we last posted on Ryan's behalf. During these past weeks, Ryan has been confined to his hospital bed, at home, with Mom constantly by his side. He began hospice care shortly after the last post. They started out visiting once or twice a week and currently they visit three times a day. Ryan has received many other visitors-- siblings, aunts, uncles, cousins, bosses and close friends. He was extremely excited when his Goddaughter, Kendal, came for a visit. He was even able to hold her, which made his day!

Godparents, Caitlyn and Ryan, on Kendall's Baptism Day

About three weeks ago, the Little Sisters and Little Brothers of the Lamb visited Ryan. They sang hymns over Ryan, bringing a spiritual calm and peace to him and the family in a powerful way. It proved to be a beautiful, emotional experience. With the Little Sisters and Little Brothers, Father MacDonald prayed at the grotto (which is known for miracles) for Ryan's peaceful passing into eternal life. Ryan has also been able to receive Holy Communion on several occasions when Father came to visit. 

When Dave Jones, Famous Daves co-owner, came to visit, he remembered Ryan's all-time favorite football team: The Nebraska Huskers. An avid and lifelong Husker Fan, Ryan was honored to receive a special message from Scott Frost on an autographed football. The message included the following Bible verse:

For I am convinced that neither death, nor life, nor angels, nor principalities, nor present things, nor future things, nor powers, height, nor depth, nor any other creature will be able to separate us from the love of God in Christ Jesus our Lord (Romans 8:38-39).

Ryan was ecstatic to receive a gift from Scott Frost, head coach of
his all-time favorite football team, the Nebraska Huskers.

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Last Thursday, things took a turn, reminding us time is drawing nearer for Ryan to journey Home.  Ryan had not eaten anything and had been sleeping and rather unresponsive. Then, Sunday evening, Mom's birthday, he woke up, asked for a Sonic burger and tater tots, and chatted with my mom for nearly 3 hours. He spent the next several days a bit disoriented, but generally energetic and 'typical' Ryan, making witty comments and observations. It was quality time for everyone. Then, last night, things took another turn. He is extremely agitated, disconnected and confused, has increased pain and once again has slipped a bit further from us. The hospice nurse increased his medication as they strive to keep him calm and comfortable. 

Ryan has fought a tough fight, but his body is worn out. Now, we prayerfully hope he has the dignity of leaving peacefully. There have been moments in his disorientation that he has asked for his late brother and godson, Jared. We find comfort knowing that they'll be reunited soon. We're also thankful to receive news that Ryan's body will be laid to rest next to Jared's, something we didn't plan for and weren't sure the cemetery could provide. 

We thank all of you who have cared for and loved our Ryan. Please join us in praying for him and continue to keep my family in your prayers. We know we have limited time with Ryan, and the next 24 hours will help determine how quickly Ryan will leave this earthly life and join all who have left before us. 

God of Power and Mercy, you have made death itself the gateway to eternal life. Look with love on our dying son/brother/uncle/friend and make him one with Your Son in His suffering and death, that, sealed with the blood of Christ, he may come before you free of sin. Amen.

O Lord, grant those who have died the joy of Your Presence, and us who are living the happiness of knowing this. 

To conclude this post, can we make a special request, for those of us who wish to be near Ryan but are unable to venture to Kansas? Please, if you are connected on Social Media, share your favorite memories, photos, and stories about Ryan. Temporarily change your profile pictures to one with you and Ryan (even if it's been decades ago!). Share here in the comments, or on his Facebook page, or on Instagram (#ForRyansRebels). So many of you have reached out with kind comments, thoughts, and prayers. We'd love to 'connect' everyone through the stories and memories (the funny and obnoxious, too!) of our Ryan. 

Thank you for your love, support, prayers, and kind thoughts. Though we can't always express it to everyone, we appreciate it. 

Our Update

If you've been following along with Ryan and his journey since receiving new marrow, you're aware that this battle has been a roller coaster of highs, lows, and unexpected twists. When we started with the new marrow over a year ago (February 4, 2018), Ryan asked me to help him start this blog as a means of communication and an easy way to reach many caring people without the overwhelming responses and need for feedback. I told him I'd make suggestions and revisions and, if the moment came where he was unable to express an update, I'd post on his behalf. Now is one of those moments. When I visited with Ryan yesterday, he asked me to update. He didn't have the words. We planned to do this together, but as the day progressed, Ryan wasn't up to it. He knows I'm posting on his behalf. Please know I'm writing with the help of my sisters, Lauren and Meghan, trying to keep things as accurate as possible.

So, an update: 

In December, we learned that the doctors had used their best weapons, but Ryan was still losing the battle with Leukemia and he was diagnosed as terminal. Refusing to give up, doctors considered old and new research and wanted to experiment with an antibody treatment. Within 30 days, we learned the news that shocked everyone, including the doctors:

We received a miracle with the antibody therapy. Ryan was able to enjoy life. He enjoyed a "Columbas Baking" reunion with the Heims, celebrated his Goddaughter Kendall's baptism, and at the end of March, Ryan felt well enough to take a plane ride to Phoenix, Arizona. He enjoyed a long weekend with old friends. Ryan even got to celebrate his 40th birthday on April 18th.



Despite our newfound hope, Ryan began to feel worse. shortly after returning from Arizona. With severe stomach pains and constant vomiting, Ryan took several trips to the Cancer Center for treatment, blood transfusions, and pain management. He was admitted once for vomiting and again, a couple weeks later, for pain management. 

Last Wednesday (April 24), he was admitted for pain management. Thursday (April 25) they did a PET scan, which came back 'lit up' with cancer, so on Friday (April 26) did another bone marrow biopsy. The news came on Saturday (April 27) that was again not what we were expecting. 

The cancer was back in his bone marrow and blasting. 

Ryan woke up in the middle of the night this past Wednesday (May 1) to use the restroom and fell, a new numbness in his legs making it difficult to walk. Thursday (May 2) he went in for routine bloodwork. The doctor noted that Ryan's left scapula was already deteriorating. Because Ryan was losing mobility, they wanted to do a spinal tap that Friday to determine if the cancer was in his spinal fluid; however, Friday he was unable to walk without help and opted not to take the test as it wouldn't change anything.   At this time, we believe the cancer is in his spinal fluid. The pain and numbness continue to spread, leaving him immobile, frustrated, and exhausted.

Over the last three days, Ryan's condition has quickly deteriorated. When I spoke with him yesterday, he said he hasn't ever felt quite like this; quite this bad.  Today, he is unable to walk, stand, or feel his legs at all. Hospice care is being set up. Ryan is trying to stay strong, comfortable, and at peace. 

Please know that Ryan hears of your kind comments, reads your encouraging messages, and appreciates the thoughts and prayers. He wants people to know where things are at this point, but that's hard to communicate. There isn't an etiquette lesson for this. He wants everyone to know, but he also wants privacy to spend quiet moments on his terms.

For family and friends, its easy to feel helpless. Right now, the best help is prayers.

Please pray for Ryan-- for his strength, comfort, and peace. 

Please pray for our parents-- as they hold their son and other children through this.

Please pray for our Kansas family-- as they provide care for Ryan, helping with support at home, doctor's appointments, and comedic relief as needed. 

Please pray for our Nebraska family-- as they provide care and support in the unique ways allowed by time and distance.

Please pray for each other--that we all be the light of Christ, witnesses to the Resurrection, and find hope in eternal life.