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.

h

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.

An Update and the Frustrations!

The last 3 weeks have flown by. It was great to be free to do what I want, well to some extent.  In the first 2 weeks I was at the Cancer Center 3-4 times each week. They were closely monitoring my blood levels and its chemistry. For the last few weeks it has shown that my blood has continued to recover, and my critical cells are almost all back to normal range and ready for another round of chemo.  They also like to talk about my stools A LOT.  I'll just leave this here.....  

FYI it's a milk duds kind of day when you're taking chemo...

Thought this was interesting.....

I checked back into the hospital on Sunday January 28 and immediately started chemo again.  This round included 2 days of Cytoxan followed by a day off (Tuesday) and then 4 days of Busulfan.  I have currently completed the Cytoxan and, as of today, I have finished the Busulfan.  GOD WILLING, I am done with chemo!  I did have some nausea the last couple days due to the Cytoxan, but the doctors have done a great job of getting my anti-nausea medications adjusted to counter the effects of chemo.  It is too soon to know if the chemo has done its job, but all blood work shows good indications that my immune system is nearly wiped out.  Once my immune system is wiped out I will be ready to receive the transplant!  This is scheduled for Monday the 5th and it will be a day that will be celebrated as a second birthday, and a new lease on life.  I am grateful for my brother, Sean, as he has begun his process to donate his stem cells to me.  He began his shots Thursday which will cause his body to over produce stem cells so they can be harvested and transplanted. I cannot wait to get this transplant!  It will be the beginning of my official recovery!

I have spent my 2 weeks off getting moved into my parents, finalizing insurance and Social Security before I was too far into chemo to want to deal with it.  Dealing with insurance and our government have by far been the most frustrating part of this process!  My insurance, through my previous job, took a large jump in cost (COBRA) due to me having to leave my job and on top of it the coverage changed to something much less than it was in 2017.

The hospital has been great and stepped in to help absorb some of the coverage that was lost due to the insurance changes on my COBRA policy.  I had to carry this policy in order to receive a transplant.  KU would not offer a transplant unless I was covered by a major carrier and not a government program or insurer.  After many phone calls and applications, I did also qualify for Social Security Disability, but that won’t pay a dime until sometime in August when this is nearly over.  With all these frustrations there have also been many friends and family that have rallied to offer their support emotionally, mentally, and financially to help get me through these times and I cannot express enough appreciation for these people.  Cancer is not an easy disease to fight mentally, physically or financially but the people in my life have certainly made a difference. 

As I come into the beginning of my official recovery period I look forward to what is ahead.  This experience and time spent in the hospital has really opened my mind up and it makes me excited to get back to work (wherever that maybe, I’m looking).  It is still a ways off as summer seems so far away but its never too early to start dreaming of the day!

1-14-18 Update

Sorry for such a delay between posts!  I was waiting to see how the week would end before I posted.

Since last week, I have been waiting for my blood to recover from the chemo.  Last Tuesday they told me that my ticket home was my ANC (Absolute Neutrophil Count) reaching .50.  On Tuesday it was finally measurable and they got a measure of .34!  Normal range is 1.8 - 7.  They continued to climb through the week and reached .40 on Thursday.  At this point I was expecting to go home the next day (Friday) because they were so close on Thursday.
The nurse come in Friday morning and told me the at my ANC was at .32 which meant I wasn’t going home.  At this point I was packed up and ready to go; her news was a huge letdown.  Aware of my disappointed reaction, she told me to “wait and see what the doctor says.”  That morning I was also needing blood due to my hemoglobin being low.  The doctor finally got to my room about 9:30 and told me he was re-testing me since I received blood and he also didn’t feel the ANC was accurate.  He was as shocked as I was that it fell.
After redoing the labs, my measures came back at .92!  I was going home!  They released me back to the “free world” on Friday at 3PM.

I am loving this break.  It’s nice to finally be home after spending 25 days at the hospital. I should be home for the next 2 weeks before starting the transplant process.  I am pretty anxious to get this going. The 2 weeks off will be nice, but at the same time, I want to get this over with.  I am more nervous about starting this round over the first round.  The first round was great, I can't complain about any of it. It was far easier than I ever expected.  I feel like this next round isn’t going to go like that.  I am hoping for the best, but I’m ready to for worst it can throw at me.  I haven’t got any dates on when the transplant will start.  I’m sure they will be working on that Monday.  In the meantime I am going to enjoy my 2 week break and I will update once I have more info about the transplant.

1-4-2018 Update

Another uneventful week!  I finished chemotherapy on  December 27 and was told that some tough days would be ahead of me, the doctors made sure to remind me of this daily.  Naturally, I was nervous for what was to come. They warned me that extreme fatigue, fevers, nausea, and chills are the most  common side effects of the treatment.  I laid down every night wondering if tomorrow was the day it would hit. A full week went by and I was still feeling good.  I didn't understand why it hadn't hit me yet. 
On Monday, the doctors came into my room like they do everyday and told me the window for the "dark days" of chemo was past us.  I never experienced any symptoms other than Petechiae, which is little red dots on the skin caused by low platelet counts.  I am also having issues with my appetite, but I am getting something in me everyday.  God was good to me! The doctors said my body handled the chemo better than most patients.  I am still in shock that I escaped the roughest part of chemo.
 On Tuesday I had a bone marrow biopsy to see if the chemo worked.  The goal was to have "Empty Marrow."  Empty marrow is basically cancer free bone marrow.  I found out today that the marrow was indeed "Empty"  and we are on track for the transplant.  As soon as my blood counts recover from chemo I will be able to go home for a couple weeks to give my body a break.  Currently, I am back on oral chemo which has no side effects.  I also started to lose my hair this week and will be shaving it off  to avoid having hair everywhere. 
Thank you for all the prayers-- they are working and I am grateful for all the support!

Last Day of Chemo

Wednesday, December 27, Ryan received his last bag of chemo for this round. So far, he feels okay and is counting these days as blessings, especially with doctors warning him the tough days will be here soon enough. Every good day is one less bad day.

12/26/2017 Thoughts from the past week

I am glad to have a week behind me!  It wasn't the easiest week for my mind, but I am grateful it wasn't so bad physically.  It was hard to be here in the hospital over Christmas, but I made it through.  I will admit I did shed a tear from time to time wishing I was with my family celebrating the holiday.  Several people told me that with today's technology it will be easier because I can Skype, FaceTime, Snapchat, etc and feel like I was a part of the celebration.  In reality it wasn't that way at all.  Seeing friends' and family's social media posts made it even harder because I saw exactly what I was missing.  I often found myself pushing the emotions aside and keeping my focus on the big picture. I have had visitors everyday since I have been admitted which helps pass the time greatly. I have spent a lot of time walking laps around the "Unit" trying to do at least 14 laps, which translates to a mile walk.  The walking helps clear my mind and it makes my body feel good.  I have been using all this time I have to do a lot of thinking.  I been working on my relationship with God and trying to mend the struggles of the past that I felt were because of Him.  Many people that know me well know that I do believe in God, but I was not His best example of faith.  With help from Fr. MacDonald, my sister Shannon, and even a message from a childhood friend, I am beginning to understand what He does and is doing now.  I know this all seem so weird coming form me, but this experience in my life has really made me take a look at my faith and the lack of understanding I have had over the years.  I even went to confession for the first time in over 20 years.  There was something inside me that told me there isn't anyway I was going to pull through this without the Lord on my side.  I have to say opening my heart back up to God was the best choice I've made.  I have felt more at ease in the last weeks than I can remember in a long time.  I also have to say all the messages on Facebook have warmed my heart more than anyone will ever know.  I promise I have read each and every message that has been left and I thank you for taking the time to offer your support and encouragement.  I will eventually respond to the people that left me a PM as soon as I have a moment to respond with the attention they gave to me. Sorry this update is so off the wall for me, but this has been my week.  I really dont have much to update in the sense of the cancer.  We are still waiting to see if the Chemo has worked accordingly.  The Doctors have told me all my labs are exactly what they want to see.  My body is handing the Chemo nicely and without any serious complications.  I will have a bone marrow biopsy on Monday next week and this will tell us if I am in remission for AML.  If I am indeed in remission, I will get to go home for a couple of weeks and take oral chemo to give my body a break before we start round 2 of Chemo for the transplant.