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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 Storyhttp://youtu.be/ejoT_x7Wxj4.

Latest Journal Update

Another amazing day!

Today, March 13, 2015 is another memorable day.  Just like November 16, 2014 when Ty received his new lungs, today Karen had her DBS turned-on.  This was her post on FB:
Today is the start of a new life for me. I am happy to be able to sit here and type on my iPad right now without my fingers shaking and making it difficult to type without creating typo errors over and over again. I have been blessed with great doctors who has helped me get to where I am today. Of course, I am very thankful for my loving family who has supported me in my decisions to have the DBS surgery. I am also blessed with such great family and friends who have reached out along the way to encourage me and pray for me. Thank you all who have been there for me. Thank you, thank you, thank you!

She still has a couple of sessions to go yet as they only turned on the device and set the amps for each of the eight electrodes.  They will be fine tuning over the next month by adjusting the frequency and pulse rates.  It's great to see her walking, getting up out of her seat and moving around normally.  It will be interesting to see Josh's reaction when he comes home this weekend since he hasn't seen his mom since before the first surgery.  It's been a great joy to watch everyone's reaction of amazement when they see her.  All of our friends here in Ohio have never known Karen before she had Parkinson's.  They are now getting to know my best friend and they have been amazed.

Ty continues to do very well.  He is out right now with friends and enjoying life as any 22 year-old should.  We are all enjoying life.  I have long dreamed of a day when I could have my son and my wife back.  Today I am living the dream.  It is the most heart warming, thankful and blessed feeling I've ever encountered.  I owe it all to my most faithful and trustworthy friend - Jesus.  He has never failed us.  He has always remained faithful.  Even when I failed to be faithful, He has always been there.  He has always picked me up when I was down.  He has always comforted me when I was hurting.  He has always loved me when I was broken.  Words cannot express to you the awesome wonder of The One True God.  He is mine and I am His.  He has given me the desires of my heart.  I know some of you are wondering why He hasn't given you the desires of your heart.  You've lost that special person He brought into your life and now they are gone.  Don't give up.  Don't lose hope.  The hardest time in waiting on God is the last half-hour.  Keep the faith.  You will be rejoined with your loved one but in His time.  In His purpose.  In His way.  Trust in Him.  Hope in Him.  Above all, live in Him.

Keepin' the Faith,
Regis
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Comentarios

9 Comentarios

Amy Harrell
By Amy Harrell
I couldn't be happier to hear how well all of you are doing. You are a remarkable family and you give each of us hope and encouragement. I pray God continues to bless each of you every day. Enjoy your time together.
Beverly Olson
By Beverly Olson, Cuyahoga Falls, OH
What an incredibly uplifting update, Regis! I am so very happy that things are going so well for both Karen and Tyler and, thus, for you. What a blessing to live in this time and in this place, when we not only have the medical technology but have access to it in our wonderful country.
Edie Chaffee
By Edie Chaffee
So thrilled to hear your good news! May God continue to bless you all. To HIM be all thanks and praise!
Faye Curtis
By Faye Curtis
through Jesus Christ we are able to go on to enjoy life. Praise God from all blessings flow.
Kris Dillenbeck
By Kris Dillenbeck
Hi from Pennsylvania,
Thank you for the update and words of encouragement. So thankful for answered prayers and all of the Blessings that our Father has given. I take so many things for granted because HE provides so much. I am so truly happy that both Karen and Tyler are doing so well. They continue to be in my daily thoughts and prayers.
Brenda Lucius
By Brenda Lucius
I am so thankful and praising the Lord along with you all!
Sandy Daron
By Sandy
AWESOME, AWESOME news!! PTL!!

Love ya,
C.O.L.E.s Foundation
(Caring Openly, Loving Eternally)
www.colesfoundation.org
www.kidsunitetofight.com
www.colespages.org
Email: sandy@colesfoundation.com
Debbie Barto
By Debbie and Dave Barto
Such WONDERFUL news!!! Prayers for continued BLESSINGS!!
Debby Mooney - St. Louis, MO
By Debby
Wonderful news, so happy that things are going well for both Karen and Ty. Your family continues to be a great inspiration for those that know you personally or just through this page, and I thank you for sharing your wisdom with us all. God Bless,

COLE Prayer Team
Debby Mooney, St. Louis MO
www.colesfoundation.org