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Tyler’s Story

On October 29, 1998, at age 6, while living in San Diego, Tyler was diagnosed with Acute Lymphoblastic Leukemia, a malignant disease (cancer) of the bone marrow and blood.  Acute leukemia is a rapidly progressing disease that results in the accumulation of immature, functionless cells in the marrow and blood.  
He spent the following 2 1/2 years going to the hospital for chemotherapy treatments.  In June 2001, we were so excited to know that his treatment was finished and celebrated with our family and friends.

After several years in remission, on May 25, 2005 at the age of 12, while living near Pittsburgh, he would face cancer again and endure another 3 1/2 years of chemo.
He finished his chemo treatment in the summer of 2008.  Things had been going well and we had been looking forward to Tyler's Senior year in High School.  We had been getting prepared with school with such things like new supplies, clothes and Senior portraits.  
In September of 2009, Tyler went in for his monthly routine check-up.  During his checkup, his doctor checked his neurological state and asked him to follow her finger where she pointed.  When she pointed up above, the iris of his right eye was not as strong and did not go to the same level as his left.   She suggested we go see an ophthalmologist to see why the iris on Tyler's right eye was lower than his left during a routine neurological test. 
Several days prior, he started feeling tingly sensation on the right side of his face, headaches, nausea, and neck pain.  After talking on the phone with the clinic, it was suggested we go down to have a CT scan and MRI  of Tyler's brain were they found a few lesions.  A 15mm lesion was putting pressure on an optic nerve that controls 4 muscles to the right eye.

With his doctor on vacation, the clinic still felt it was important enough for us to be seen by another doctor.   The next day, after a painful spinal and bone marrow test, we found out the horrible news, the lesions were a result of leukemia in his brain.

After his last diagnosis on September 18, 2009, he immediately started chemotherapy.  It was then determined a bone marrow transplant (BMT) would be necessary.  We were blessed with a perfect match donor, his sister, Chelsea.  The BMT took place on March 3, 2010.

It has been over four years since that day.  Since then, Tyler has been dealing with late effects from his 6 ½ years of chemotherapy and radiation treatments as well as Chronic Graft vs. Host Disease.  He was diagnosed with Pulmonary Fibrosis and Bronchiolitis Abliterands in early 2012 as a result of the radiation treatments.  His condition steadily deteriorated through 2014 and on November 16, 2014 Tyler received new lungs.

After being diagnosed a 3rd time with Leukemia, having a Bone Marrow Transplant  in March 2010 and a Double Lung Transplant on Nov. 16, 2014, Tyler continues to fight this battle.  However, God continues to work in his life today.  For brief synopsis, in his own words, of his struggles this past year, You can watch this video: Tyler's Story

Latest Journal Update

A year ago today.....

It was one year ago today!  Let me first start by telling you: Ty had his 1 year checkup last week.  He is doing fantastic! His lung function is at 94% and continues to climb.  Although he has had 4 acute rejections this past year (Higher than normal) it has no bearing on future rejection.  A higher number of acute rejections in the first year means nothing as far as longevity nor future increase in rejection.  All is well.  We went out to dinner to celebrate on Saturday night as Josh came home from OSU for the weekend.  We also went out tonight to celebrate again.

I remember that day last year so very well.  It was Sunday morning.  Ty was in the hospital for the past week and they were going to move him to a special care facility the next day.  Either he wasn’t ever coming home again or he will eventually be coming home with new lungs.  Karen had spent the night at the Clinic with Ty and I was getting ready for church and then head up to Cleveland while Karen came home to go to church and rest up.  She came home early, before I left for church and I remember we started arguing about something.  Something irrelevant as the stress of the situation was weighing in.  I went off to church and she stayed home to freshen up before the next service.  As I sat in the auditorium as the service was about 5 minutes in, Mark came up to me and said Karen was in the Café waiting for me.  In wonder, I walked out to see her crying and my heart sank until she said “Tyler’s got lungs.” In disbelief, I said “What?” and she said Tyler’s got lungs.  I hugged her ever so tightly as we began to ball our eyes out in joy, relief and awe.  There are tears of joy but this was way beyond that.  It was definitely sobs of joy.  We quickly ran out to the car as Karen started making phone calls.  Everything from that initial moment on was surreal.  I remember it seemed like an eternity from the time we got there to when they started the transplant.  Several dear friends came to join us in the waiting area as only a few of us at a time could go in and see him beforehand.  Micah and his parents came as well as my sister Theresa, who drove 2 ½ hours in the snow and drive back that night.  Josh also commandeered a car and drove 2 ½ hours as well.  It was a long day.  A long night.  I think it was somewhere around midnight that we got to see him post transplant.  What a transformation.  He had color.  No more grey but read and pink skin.  He was breathing normally.  No more 80 or 90 breaths per minute.  His heart rate was normal.  No more 120 - 140 beats per minute.  He looked alive.  It was a day none of us will ever forget.

Chelsea posted this, this morning:
Happy 1 year anniversary to Tyler for being here with us after SURVIVING a double lung transplant! So thankful for all of our family, friends and community who all came and supported us through this hard time in our life. This is how I KNOW that God does turn tragedy into triumph. My brother's life is living proof. Obviously, God isn't finished with him yet.

Joshua posted this:
One year ago today, I received a call that changed my life. My mother called to tell me that it would be the day that my brother, hero, and best friend would be the recipient of two brand new lungs. I immediately drove home, and made it to the hospital too late to see him before he went into surgery. I was nervous, and terrified. The moment my family had been waiting for, for over a year was finally happening. After waiting for nearly four hours, I finally got to see him, alive. His recovery and progress since that day have been incredible, and his strength and perseverance through years of hardship has never faltered. I am beyond proud to call him my brother, and I am so thankful to still have in my life. Happy one year anniversary Tyler, I love you (even though I might not always say it)

Tyler posted this:
-Psalm 103:2-4 
2 Let all that I am praise the Lord;
may I never forget the good things he does for me.
3 He forgives all my sins
and heals all my diseases.
4 He redeems me from death
and crowns me with love and tender mercies.

Karen posted this:
Thank you to all of our friends and family who have been there for us through this past year, you know who you are. It has been a year of ups and downs with Tyler's health and the potential rejection of his lungs (the precious gift that was given to him by someone truly special). God continues to reign on the throne of grace and mercy. We have been blessed with another year with our son, Tyler. Thank you Lord for continuing to be with Tyler and using him to share your love with the lost.

I posted this:
Today we celebrate an amazing milestone, 1 year ago today, Tyler received a double lung transplant and is doing very well. Our God is an awesome God and sustains us to fulfill His purpose through us and in us. "Though ten thousand fall at my right hand, I will fear no evil for You are with me."

We have been amazingly blessed by all of you with your love, prayers, help and support.  Thank you all from the very bottom of our hearts.  But we have been given the most amazing grace by our Lord and Savior Jesus Christ who has mercifully held us all together and faithfully carried us all through this as well as the past 17 years that culminated on this day, one year ago.  Our deepest thanks, love and devotion is to you our Lord for your mercies are new every morning.  Great is your faithfulness.

Keepin’ the faith while livin’ the dream,
24 people hearted this



Nancy wick
By Nancy Wick
These pages shine with Joy.years and years ahead of you Tyler. Enjoy every minute. Prayers always :-)))
1 person hearted this
Maria Falbo
By Maria Falbo, Wheatfield, NY
Thank you for the wonderful update and Thank You to our awesome God. You are a wonderful and blessed family.
1 person hearted this
leona hensel
By leona hensel
Dear Regis and Karen , THANK GOD FOR THAT AMAZING VICTORY REPORT. We just had a class on faith as of a mustard seed 🌱 this past Sunday (yesterday) and I hope you don't mind but I used Tyler and his situation a year ago with his lungs and how we moved those mountains as an example of faith as of a mustard seed 🌱. I didn't use his name just the example of how and what everything was that happened with him. I would never use his name without your permission. I am ecstatic to hear how good he is doing. We love ❤ you and are happy that you are continuing to keep us posted on Tyler. Thrills to know that he's keeping the devil on the run 🏃 and doing everything he can do help people and kids to what God can do. No better way to tell them than to see a living, breathing, walking 🚶, talking testimony. We love ❤ all of you and continue to pray 🙏 for continued success. Love ❤ from your Bartlett UPC prayer 🙏 team
Kris Dillenbeck
By Kris Dillenbeck
We truly have an awesome God and I am so Thankful to Him for His healing grace upon Tyler. I am also Thankful to Him for hearing and answering prayers....because there sure have been many offered up for Tyler. So happy for Tyler's progress and how well he is doing.
1 person hearted this