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Olivia Bono

Olivia Bono

Age: 3 | Gender: F

I remember freaking out and saying to the Doctor, “My mind is going to the worst possible place. Please tell me what you’re thinking this is.”

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Olivia's Story

First off, thank you so much for all you do and your generosity in helping Livie and our family. My daughter, Olivia, was just recently diagnosed with cancer in May of this year. She had just turned three the weekend before and had picked up a cold but was her usually spunky self. Our pediatrician checked both Livie and our younger daughter, Molly, out and said, thankfully, it wasn’t Covid but just a little virus. One night a week later, she hadn’t had much of an appetite at dinner and when I changed her for bed I noticed her belly still seemed rather large and she said she had a little tummy ache. So the next morning I called our pediatrician and asked to do a quick check. I thought I was likely overreacting, but something told me to just take her in. We met with the new PA since it was a same-day appointment and she paused and asked if we were willing to wait a minute while she asked our regular pediatrician to come take a second look. I’m so grateful she did because when he came in and felt her stomach, he grew very concerned. He said the quickest way to check and rule everything out was to go to MUSC Children’s Emergency. I remember freaking out and saying to him, “My mind is going to the worst possible place. Please tell me what you’re thinking this is.” He responded that he was worried about possible malignancy.

When we got to the emergency room, they ran every test you can think of and confirmed that Livie had advanced cancer of the kidneys, called Wilms’ Tumors. She was likely born with it and they’ve been growing very slowly but by that point, our oncologist stated her entire left kidney had been consumed and only about ½ of her right kidney remained. We were absolutely shocked. I remember looking at Livie and thinking that it wasn’t real, it was a dream, and that they’d made some kind of horrible mistake because she was healthy, she ate well, played well, and had no symptoms of something so horrible. I also felt like I’d failed her. How could this have been in her body since birth and I didn’t know?

Mother’s Day weekend, Livie underwent her first surgery to place her chemo port. We went to the ER on Thursday, Friday she had surgery, and Saturday she started her first round of chemo. They went at it aggressively but she got very sick and started to lose both her hair and weight. Thankfully, they put her on an appetite stimulant to help combat the weight loss and she’s done really well. St Jude’s wrote the protocol on attacking Livie’s type of cancer so we did two rounds of chemo (6 weeks each) with scans after each round. The goal was to shrink the tumors as much as possible, then surgically remove the smaller tumors, follow up with radiation if needed, and more chemo after that. When we learned that St Jude had not only written the protocol but also had the leading Wilms’ tumor surgeon in the country, we asked for their second opinion and they confirmed that we were on the right track.

In July, we learned that our urology surgeon at MUSC had just resigned. Per our oncology team, nothing like this had happened before and they didn’t know how to move forward so felt it best that we travel to St Jude in Memphis. While we weren’t expecting any of this, it also felt like God directed it because we ended up with Dr. Davidoff as Livie’s surgeon. The first thing his nurse told me when she called was that they would take excellent care of Livie and that Dr. Davidoff was the best of the best when it came to Wilms’ tumors. Families from around the world came to him to save their children and surgeons from around the world came to him to train. In August, we ended up traveling to Memphis for the first time. It was Livie’s first plane ride and she absolutely loved it! We met our surgical team and on August 25th, she had surgery. So many people love this little girl, so many have prayed for this little girl, but yet in that moment, I was terrified I would never see her again. I was so scared I’d go back home without my sweet girl. After what seemed like days, they called and she was done. When we saw Dr. Davidoff, he told us he had been able to save about 95% of her right kidney and ⅔ to ¾ of her left kidney! Truly a miracle! He left a margin on the left kidney in order to preserve healthy tissue so she had a follow up of 6 radiation treatments to get the remaining cancer. St Jude has proton beam radiation which is laser pinpointed to target directly and not something available anywhere in South Carolina.

We’re now in the home stretch. Livie has chemo every three weeks now instead of every week, she’s gaining weight, she’s more relaxed, and she’s laughing and singing again. She’s been through so much in just a few months and has been brave throughout all of it. I just can’t imagine going through what she’s gone through and yet she’s still sweet and kind and loves to talk to people and kiss on their puppies, loves to sing, dance, and go to the beach. She really is a fighter and she’s going to beat this!

Olivia's Hobbies & Interests

Sea creatures, especially stingrays and dinosaurs! She also likes construction and firetrucks, police cars, etc. She loves art and crafts and one of her favorite things to do is build a pretend dinosaur world or an aquarium. She also loves the movies Cars and Wall-E. Light blue is her favorite color.

Olivia's Wishlist

- Little table and chairs to work on her art at - Magnetic letters learning to write board - Bike helmet and elbow/knee pads sitting tricycle or little tykes cozy truck - We’d love a Christmas dress for the girls -Shirt & Pant Size: 4/5T - Shoe Size: 10C

The Bono Family


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