Tyler | CaringBridge

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.

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 via bilateral lung transplant.

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.

Since October of 2016, Tyler had Chronic Rejection of his new lungs and on February 13, 2018, Tyler had a bilateral lung re-transplant.

Newest Update

Journal entry by Regis & Karen Froats

So it’s been an interesting week plus. So Ty started not feeling well and coughing a lot. After a day he felt a bit better; however, his daily pulmonary tests started trending in a decline. He called CLE Clinic on Wednesday about it and his coordinator said, although the decline isn’t 10 points or more, he needed to come in and get tested for any viral infections. She called back Thursday and said there is no viral infection. She called to see how he was doing on Friday and his cough was still persistent so she made arrangements for him to come in Tuesday (today). Over the weekend his pulmonary numbers started to trend back up. Today his lung function is 4 points higher than last month so his lungs are improving. The “black specks” he’s been coughing up since the transplant is nothing of any concern. It could be as simple as possibly the donor lived in an urban environment. Anyone who lives in a city, the inside of their lungs are black. So the lungs could be trying to clean house. His current coughing could be allergy related so they are prescribing Singulair which, by the way, also helps fight chronic rejection. A win, win for Ty on what would normally be a pain to add an additional med to the 25-30 he currently takes daily. So, 2 unscheduled visits that turned out to be more of a relief in that the issues are not serious.

He’s still on track for his 6 month post-op checkup at the end of this month.

Karen and I are relieved that there is no viral or respiratory issues. Last time that happened was in September of ‘16 and he almost didn’t make it except for that genuine miracle that the Lord did and Ty “miraculously got up and walked out of there”, as one nurse put it.

Except for another miracle, there is no third transplant, so every little sniffle or cough or anything brings on concern and anxiety.

Keepin’ the faith,

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