SAGAMORE HILLS -- Sarah Jane Bush, 14, a Nordonia High School freshman who died last month within weeks of being diagnosed with leukemia, will be remembered as someone who was always looking for the positive in life.
Her parents John and Wendy sat down with the News Leader to share a little of who Sarah was and her story. Her brother Matt attends school at Rushwood Elementary.
Wendy said that after Sarah died, she found out her daughter had started a YouTube channel to post videos during her illness.
"Even as ill as she was, she was trying to inspire others," Wendy said. "She only did them the first two weeks, because she didn't feel good after that."
John said one of the things he loved most about his daughter was "she always looking for the positive in people ... she always tried to encourage other people."
"It hurts even more, here's someone who is encouraging everybody and she had big struggles herself," John said.
An April 8 posting on Sarah's Orange Hamster Channel said "I just want people to know that It is a lot easier when u look at things positively!"
Before she was diagnosed with leukemia, Wendy and John said their daughter was very active with several organizations including Northfield Village Skilled Nursing and Rehabilitation, the Humane Society of Summit County and the library.
"She was really giving of her time," John said. "She participated in a lot of group activities and solo activities meant to help people."
Sarah was also a lover of animals and John said she had a natural pull about her when it came to animals.
"The zoo had a butterfly exhibit and she'd go in and butterflies would land all over her, and I'd stand there for three hours and none would go near me," John said. "She just had something like that."
"She loved to show off her horse, Boss," Wendy said. "That's what got her into volunteering because 4-H does volunteering."
Music was another passion of Sarah's. She was a member of the choir at Nordonia Hills High School. She had started in middle school after outgrowing the youth choir at church. John said there was kind of an age gap in the choirs between young kids and adults at church so Sarah joined the school choir in seventh grade. She was planning to be a member in her sophomore year of high school and had even adjusted her schedule to make time for it.
A rocky start
Sarah didn't have the easiest start in life, as she was born with a heart condition and had two open heart surgeries by the time she was 5-years-old. While the repairs to her heart worked well, she did experience loss of energy quickly during physical activities such as swimming or hiking, her dad said.
"As long as it was a very mild activity she was OK," John said. "She did a lot of things like kayaking and skiing."
John said because of Sarah's heart problems, she had a condition called malrotation where her organs in the lower half of her body flip-flopped, causing her to lose her spleen. He said her entire life she was on a low-grade antibiotic to fight infections.
In March she started running a fever, John said would come and go, spiking at different times. He said her health began to suffer because of the fever but she did not have cold or flu symptoms. Wendy added Sarah became really tired during this time. Sarah's doctors were at the Cleveland Clinic in Cleveland so Wendy took her to the doctor's office who in turn said she needed testing and admitted Sarah to the hospital March 21.
On March 22 John and Wendy were told Sarah had leukemia. John said he told Sarah that evening because he wanted the news to come from her parents and not the doctors.
Even through delivering the news to Sarah, she was encouraging. John said he teared up trying to tell her she was diagnosed with leukemia and would have to have chemotherapy, but Sarah said "Don't worry dad you can get through it, keep going." He said she was very matter of fact and asked questions concerned about losing her hair and what would happen with school. Wendy said she also wanted to know how difficult to cure the illness was.
The following day doctors did a bone marrow biopsy and said her initial prognosis was very good. Doctors gave Sarah a 90 percent chance of a full recovery, Wendy said. She said one week later Sarah was found to have a gene mutation that lowered her chances, but doctors were still optimistic with new drugs on the market being available.
"What we found out about leukemia ... is a very broad statement, of what can be about 50 different combinations, and doctors test the genes in the blood to find out specifically which gene has mutated," John said. "Once they determine which gene has mutated it determines the course of treatment."
Wendy said the Philadelphia Chromosome positive (PH+) mutation Sarah had was very rare in that only two to three percent of children with Acute Lymphoblastic Leukemia get it. John said the PH+ chromosome Sarah had replicates cells at a much faster rate, but it replicates the bad or cancerous cells. Wendy said she was responding well to medications despite the PH+ finding.
John said the goal was to give Sarah a high dose chemo treatment for 28 days and by the end of the treatment see low concentrations to no cancer cells in the lab work. Following that was to be a maintenance plan for 2 years in 6-month blocks of treatment plans to maintain having no Leukemia cells.
On April 24 doctors declared Sarah in complete remission, no Leukemia cells present in her system.
"She was on track for a full recovery," John said.
"Then she couldn't breathe that night," Wendy said.
Wendy said Sarah had been having allergic reactions to blood transfusions and they were getting progressively worse with each transfusion Sarah received. Her lungs filled with fluid which put pressure on Sarah's heart, which had already been through a lot.
Sarah died early in the morning April 27.
A memorial service was held May 4 at Christ Community Chapel, where friends, family and community members gathered to remember the young girl who gave a lot of herself in her short 14 years. Hundreds attended and wore orange to honor Sarah. When Sarah was younger her favorite color was orange but the reason the family had shirts made with orange ribbons was because orange is the color for leukemia, similar to pink for breast cancer.
John and Wendy said they are very grateful for everyone who has helped along the way.
"The community has been unbelievable," Wendy said. "We are grateful to everyone for their support."
John said getting a meal delivered may have seemed small but made a world of difference in trying to balance time at the hospital and maintaining some normalcy in their son, Matt's life.
The girl scouts are planning to plant a tree and place a bench in Sarah's honor at Sagamore Hills Park, according to Wendy. She said there are other fundraisers going on some to help with the memorial expenses, including Teresa's Pizza, and the Twinsburg Dairy Queen.
Nordonia High School Choir Director John Pickering arranged a benefit in Sarah's honor to be held June 3 at Nordonia High School. There is an $8 suggested donation but there will also be raffles and door prizes. An acapella concert will begin at 2 p.m. followed by a dessert reception at 4 p.m. All proceeds will benefit the Bush family.
Briana Barker: 330-541-9432