The Bella Bowman Foundation: Caring for Families in Their Darkest Hour

by Beth Townsend

Image 8Childhood cancer is a dark world, yet Kim and Trey Bowman are determined to bring light into that place for families who now face a similar journey as they once did. In February 2012 the young couple started the Bella Bowman Foundation. Kim finds it difficult to disguise the heartache, even these years later, as she tells the story, “I needed to do something to keep her (Bella’s) memory alive. My grief led me in that direction. I’ve learned that you have to go through it to get through it.” Kim met Trey when they were students at Southeastern in Hammond, and they dated four years before marrying. “By the time we had Bella, I was 30,” Kim shared. The young couple was somewhat overwhelmed, like most new parents, but felt fully blessed by the new arrival. Because Bella was unusually small, she was constantly tested to make sure she was healthy. “She didn’t have normal growth milestones, so there was reason for some alarm,” Kim remembered. Most tests came back normal, yet each wait on phone calls for the results was stressful. “We feel that we have a direct line to God!” she says. “There had been a lot of people praying for us for a long time before Bella got diagnosed with cancer.” “We got pregnant when Bella was about three [and] had Baylor when Bella was four,” Kim recounts. Then there came a diagnosis that Bella had Celiac Disease. It gave a sense of relief that finally something could be pinpointed. The family changed its diet, with Kim very thankful for solid information that offered solutions. But even after going gluten-free, things did not improve for Bella. “Life went on, our children grew together. In 2010, Bella was 7, Baylor 3. That March, Bella started to throw up, we assumed she was coming down with something.” From March until Bella’s diagnosis on New Years Day 2011, Bella threw up five or six times a day almost every day of every week. Kim and Trey took her to numerous doctors who had varying opinions. Image-2-2“On Christmas morning, we were opening presents and saw that look in her eye, she was about to throw up. I knew something wasn’t right, it got worse and she became dehydrated.” Bella was admitted to the hospital to treat the dehydration and again received more tests, saw more doctors, which lead to more questions. “Again everything came back normal. She had stopped throwing up because they gave her this wonderful new drug,” Kim recalled. The doctor sent them home. However, this time Kim took charge telling him, “If Bella gets sick one more time, we are coming back.” Bella did get sick, they did go back, and this time Kim requested an MRI of her daughter’s brain. “I don’t know why, I just had this gut feeling. I prayed so, so hard that night. I said, ‘God give us an answer so we can move forward. We will do whatever it takes.’” An MRI was scheduled the next day, “I knew something was wrong,” Kim remembered. After months of unexplained illness, Kim and Trey Bowman waited for the results of a brain scan completed on their 7-year-old daughter. She and Trey went back to Bella’s hospital room when the radiologist called. “When the radiologist said he was coming up to talk to us, I just knew,” Kim says. Cancer. “From there, Our Lady of the Lake Children’s Hospital took us on and then St. Jude Children’s Hospital in Memphis got involved,” Kim recalls. Doctor after doctor recommended surgery to know exactly what type of tumor it was. Once again, little Bella was a champ, “She was like, ok what’s next?” Kim says. “That is how the now famous red dot story came about. Trey brought in a picture of the brain that the doctor had drawn, pointing where the tumor was. He said ‘see this little red dot right here? That is what is making you so sick. The doctors are going to take it out and you are going to feel better.’” phone 263Kim continued, “Before surgery I was lying in the bed with her, surrounded by family and friends. Our pastor was there, and news got around we were about to pray for Bella.” Tearing up, Kim recalls, “All of a sudden the room became crowded; nurses from around the hospital filed in, we said this wonderful prayer, Bella was just smiling. I have this mental picture of that moment and remember exactly how we both felt after that.” The surgery was successful. Bella’s first words were, “Is the red dot gone?” That meant she was swallowing and breathing, all good news. Three days later she was talking and then it was back to treatment. “First, we went to St. Jude’s. The doctors and staff were amazing,” Kim emphasized with obvious gratefulness. The treatment plan included proton radiation—33 treatments to Bella’s brain stem. After St. Jude’s physicians laid out the plan, they went to Jacksonville, Fla., in February for the radiation treatments—one bout of radiation, 5-days a week, until 33 treatments were completed. Bella did great during her radiation therapy and finally it was time to go home. In May Bella started getting tutored by her teachers to get caught up with school. Now, it seemed that the worst was behind them and that the young Bowman family was in a good place. “We had a wonderful summer,” Kim remembered. IMG_0985For the young parents, everything else was put on hold. “I’m a hair dresser, so I had no income. I did not work pretty much from Christmas time for the entire year. Trey got laid off in December, right before we found out about her brain tumor. He had no job for nine months. He was interviewing during this process while we were in St. Jude. He would fly off somewhere to interview, [and] other times he would go home to be with Baylor.” Both maternal and fraternal grandparents were lifesavers. Many people sent care packages, and friends and family held fundraisers to help pay the mounting medical bills. “It took a toll on our family. When your child is diagnosed with cancer, your life stops,” Kim added, her face showing the stark reality of the challenges too many young parents face. In August, the family went to visit relatives in Atlanta. “It was weird. Bella didn’t want to walk up and down the stairs. When we got home we noticed she was slurring, it looked like she’d had a stroke. The side of her mouth was drooping.” Again, the young mother knew something was very wrong. “We called the doctor at St. Jude on the way back from Atlanta and they said, ‘come tomorrow.’” Kim and Trey took her immediately. After the scan, the doctor informed Trey and Kim that there was no tumor. Instead, Bella had a rare side effect of radiation called Necrosis. He began to explain that it’s something that can happen after radiation and unfortunately there was no cure, only limited experimental options. “There were two,” Kim shared. “Hyperbaric Oxygen Chamber Therapy (HBO) or a different chemo that they use for breast cancer.” The Bowmans chose the HBO treatment. “We did 60 treatments. That was everyday for two or three hours a day,” Kim explained. Bella was not getting better, but actually worse. She used a walker, then a stroller, then a wheel chair. She got scoliosis, which led to get back braces. The child’s health slowly declined. Her parents decided to try chemo; it was Bella’s last hope. “Once we realized it wasn’t working, I had that gut feeling again. It’s me, my momma, Baylor and Bella. We went to go see the doctor. I said ‘I want to go home.’” They packed up that day. Trey was in Sweden when Kim told him they were going home and asked him to come home. Back at Our Lady of the Lake, they put Bella on a ventilator and trek, acknowledging she may not speak again. “I did not think that she was going to survive,” Kim spoke through tears. Not knowing if Trey would make it home in time, Kim said, “I will never know how that felt for him. He didn’t know if she would be alive, on a flight for eleven hours, can’t call or text or talk.” Trey made it back and sat down with his wife. For the first time in 24 hours they spoke. “I don’t think we should keep her alive, I don’t think she would want that.” They were in agreement, knowing what was ahead for them. “This disease is eating up her brain stem. We are not going to put her through that. We are going to enjoy these last days with her.” Image-1-2“And we did,” Kim smiled as she remembered, still teary-eyed as she recalled those moments. “We had a wonderful Christmas. There were two occasions when Bella saw Mary. She had this infatuation with the Catholic religion, though none of us are Catholic. When we were at St. Jude’s, I would read to her about Mary and a nun named Bernadette and the rosary beads. She loved all that.” It was a rough ten days from when the Bowmans decided to take Bella off of the ventilator. Every day someone special came to visit: The Make-a-Wish Foundation had someone from Universal Studios fly in with the newly released Chipmunk movie for a final family movie night with Bella. The night before she passed away, Miss Louisiana brought her a crown. “That night they woke us up about midnight, Bella was not responsive. She died at 6:22 a.m. in her daddy’s arms,” Kim recalled through tears. “The hospital let us have a room across from Bella’s. My mother-in-law and Baylor slept in there, as I didn’t want Baylor to be in the room when Bella passed away. Though such a sad time, many things happened that were gifts from God to get us through it,” she concluded. Kim and Trey needed time to heal. “Our faith was strong, we found friends that were there for us. I learned how to pray… that God is in control and he gives you gifts during the struggles.” Kim acknowledged that regardless, they realized the work ahead for them. “Our marriage had been tested. No one understands this until you live it. Trey and I grieve differently. We went to grief and marriage counseling because we were separated for an entire year. Counseling was a good step for both of us. I am still worried about Baylor; she is eight and looks just like Bella. We try to make everything positive, but she does not understand.”

THE FOUNDATION

“Our foundation works a lot with Our Lady of the Lake Children’s Hospital as a St. Jude- affiliate,” Kim explains. “If your child gets diagnosed with cancer in our community, you are going to Our Lady of the Lake. There are only six St. Jude’s affiliates in the United States and we have one of them in our community, which is wonderful.” The foundation’s mission is to create and support research initiatives for pediatric brain cancer, fund new and continuous education, and offer Comfort Care to others. The foundation focuses on several areas, however, Trey and Kim have a passion for the Comfort Care aspect, as Bella’s last days of life were so very special. “We donate Comfort Care bags to families,” Kim says. “Hopefully we can give them to everyone that comes to the hospital. With St. Jude clinic we do chemo parties. We bring gifts, we do princess visits twice a month, we have Christmas, and Santa comes.” BBB_SaveDate2016_4x6v3The long-term goal for the foundation, which is most important to Kim, is Bella’s House— a hospice house for children. “We want to make it as special for the child and the whole family, just like we had ten days with Bella.” With a growing foundation, Kim is learning to juggle her time. “I work part-time. SoHo salon has been amazing. The girl I work for, Becky Broussard is supportive, she lets me sell shirts in the salon, and I do haircuts for kids with cancer at her place. They support our foundation at the salon. Working has been good therapy.” Kim’s newfound passion is driven by her compassion. They truly have a heart for the mission of the Bella Bowman Foundation. “Trey and I both said when Bella was battling, ‘when we get through all this, we are going to give back.’” Bella’s Ball is the foundation’s signature event each year. Next year it will be on March 10th at the L’Auberge in Baton Rouge. “Every year I change it up a little bit, but we still have our silent and live auction,” Kim says with enthusiasm. “It’s is a great time, and we raise a lot of money. We raised almost $200,000 this year!” One of the Bowman’s missions is to share their story so they can help others. From Kim’s perspective, “I recommend families get support immediately. My grief counselor sent me to a support group. It’s an amazing group for parents that have lost children. It has gotten me through so many things; I go once a month. Take time to grieve, it is ok to be sad or mad. The only thing that got me through this is my faith. I still have bad days, I still cry, I still get angry. I got angry the other day at God and then I just prayed, then He makes me feel better.” Kim understands that when a family goes through a crisis, people don’t know what to say. She concludes, “Don’t try to make it better, don’t say ‘I know how you are feeling.’ Just do for them the things you think they need.”