TY BARBERINE FOUNDATION
Ty's Troopers
Ty was a third grader at Starr Elementary in New Richmond, WI. He enjoyed playing hockey and soccer and was an avid Green Bay Packers Fan. Ty was well liked by his friends and family and always put others needs before his own. His smile was infectious and it is what got us all through the tough days during his journey. Throughout his journey he touched the lives of many and taught us all to never give up.
Ty was your average 8 year old. His illness was discovered after a visit to urgent care due to him not feeling well for about a week. He tested positive for Strep and antibiotics were prescribed and started immediately and that was that. An appointment was scheduled with his primary pediatrician as Ty had been exhibiting other symptoms such as tiring quickly while playing soccer and was just more tired than usual. The visit with the pediatrician went well and overall he thought Ty looked good. I suggested a Complete Blood Count to check his iron level. I can still recall the events in great detail of that day. We left the doctors office and went to Subway for dinner and then headed home. Upon arriving home we had not even taken our coats off and the phone rang. When I heard the voice on the other end my heart immediately sank. Ty's doctor said that his blood work was abnormal and it looked like leukemia. Despite the news that I was just given I managed to write down all of the details as the doctor was relaying them to me. We were instructed to be at Children's Hospital in Minneapolis the following morning at 7am to meet Dr. Joanna Perkins.
This was the beginning of Ty's journey. On April 28, 2011 we were told Ty had Acute Myelogenous Leukemia. It was about a week later after further genetic testing that we were told that he had a very rare and high risk mutation of the cancer cells know as, q5 deletion and also MLL. After 45 days in the hospital we were given more bad news, Ty's first round of chemotherapy was unsuccessful. We were told to go home for a week to give Ty as well as ourselves a break. Before we had even left the hospital we were informed that they had come up with a treatment plan. This round of treatment was successful and we were off to the University of Minnesota Amplatz Children's Hospital for a Bone Marrow Transplant(BMT) under the care of Dr. Michael Verneris. Scott and I were tested to see if we could be a possible match for Ty but no luck. Next the National Bone Marrow Registry was checked and two matches were found for Ty. There were two found for Ty because he was in a randomized clinical trial and he was chosen to receive two. The two matches were from umbilical cord blood. We are thankful for the parents that chose to donate their babies umbilical cord blood to the registry and helped to give Ty a chance at beating AML. On August 1, 2011 Ty had his re-birthday(this is what the staff at the hospital calls it) because all of Ty's bone marrow was wiped out during the week prior to transplant and it was replaced with brand new healthy cells.
The months following transpant were rough for Ty. He had a bad case of GVHD(Graft vs Host Disease) which required him to be on high doses of steroids for almost five months amongst other numerous antibiotics. The steroids did the job to get rid of the GVHD but Ty's body took a beating. He struggled with balance and walking was even difficult. We celebrated when he took his last dose of steroids. Ty was working on regaining his strength and balance with the help of a physical therapist at Orthopedic Sports Inc. As the weeks passed Ty impressed his physical therapist with his determination and how quickly he was progressing.
Ty turned nine on February 8, 2012 and things were looking good. Everything but his appetite, Ty frequently complained of his stomach hurting and ate very little. An endoscopy indicated that Ty's stomach was completely normal and the doctors just thought he needed more time for his digestive system to adjust from coming off of the steroids.
Towards the end of February Ty began having diahrrea which I reported to his doctor at his weekly check up. I was told to keep an eye on it. A week later on March 6, 2012 Ty was addmitted to the hospital for severe dehydration and was administered fluids. His kidneys began to shut down causing them not to work properly and the fluid began to build up in Ty's body. He was moved to the PICU and for the next month and six days doctors could not determine the cause of Ty's diahrrea. At 9:55a.m. on April 12, 2012 Ty earned his well deserved angel wings. He beat cancer but his little body couldn't with stand the harsh treatments that it took to get rid of the cancer. We asked Ty a few days before he passed if he was scared and his answer was, No.
We are here to carry out Ty's wish by establishing the Ty Barberine Foundation- Ty's Troopers. He wanted to use his own money to buy all of the kids in the hospital toys to help brighten their day and give them something to do while in the hospital. We are doing just that and also funding research for Leukemia.