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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

Too Good to be True...

Seems so crazy to be saying this but I am feeling like a million bucks!  You ask, "How crazy is that?"  Well, just a few months ago both Tyler and I had such limited lives and now both of us are doing great.  Everyone I pass ask me, "So how is Tyler doing?"  To which I reply, "Gosh,  I am not sure how he is today, I haven't seen him today." He is enjoying life so much that he is never home.  What a great feeling to know he is not attached to oxygen tanks or anything else weighing him down.  Spending the time with friends, going to concerts, out to eat, and much more.  It is so nice to know he is feeling this good. 

And for me, people stop me at Buehlers and ask me, what is going on with me.  Why do I keep smiling and am looking so different.  Well, I truly feel great and do not have 50 lbs of garbage sitting on my shoulders. 

And now, we look forward to our daughter marrying an awesome guy in 7 weeks.  Life has been busy and we couldn't be happier. 

Thanks so much for all of the prayers and support.  We love you all so very much.

Blessings,

Karen

 



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Comments

15 Comments

Donna Moore
By Donna
Awh!!! That really makes me happy with a HUGE smile....I'm SO excited that you are both doing so good....I really need to make a trip up there...I hope to catch up with both of you when I do! Love you guys <3
Sandy Daron
By Sandy
Praise the Lord!! What wonderful news!!

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
Karen Hay
By Karen Hay
Praise God! So glad to hear this!
Edie Chaffee
By Edie Chaffee
So glad to hear of good health, happiness, and God's love in your lives. Enjoy it! God is good!
Mindy Wysocki
By Mindy Wysocki
Karen,
It's been such a blessing to have the privilege of following your story. So glad that you and Ty are feeling so well. Praise God!