Childhood Cancer Awareness Series – Part Two: Paislee’s Story

Mary Beth Sallee

Managing Editor

Hart Co. News-Herald

 

Kristen Bussell described her daughter, Paislee Lynn Bush, as having been a very hands-on baby who loved being read to, especially books that had textures in them or made noises. Kristen also said that Paislee radiated joy to the world.

“Paislee was always smiling, laughing, and happy. She was always so brave, strong, and radiant,” Kristen shared. “She was spunky, spontaneous, and outgoing. She loved to be outside. She loved to play with balls, her toy kitchen, and loved to paint, anything that that was crafty really. She even loved to help us do laundry by putting clothes in the dryer. Her favorite foods were Cheez-Its, ring pops, and anything sweet. She had a nickname of “Nuggle” because we were snuggle buddies.”

During what should have been a time that Kristen continued to watch Paislee grow and thrive became a nightmare for her family.

At only 10-months-old, Paislee was diagnosed with Stage 4 Malignant Rhabdoid Tumor of the kidney, a very rare and very aggressive cancer that also spread to her lungs. About 20 to 25 new cases of malignant Rhabdoid Tumors are diagnosed each year in the United States.

“Towards the end of October in 2023, Paislee started to get a fever. She was taken to the pediatrician where I was told this was an ear infection,” Kristen said. “After a week of antibiotics, the fever was still present. I had taken her to Norton Urgent Care of Elizabethtown where I was then told this was just something viral and to let it run its course. A week after this, she still had a fever, so I took her to the emergency room in Louisville at Norton for Women and Children. This trip, I was told the same thing – viral infection – along with constipation. After multiple trips to the pediatrician, urgent care, and the emergency room, a full work up of labs was completed, and this showed Paislee had a dangerously high level of calcium in her blood.”

Paislee was then admitted and transferred to Norton Kids in downtown Louisville. After two days of being admitted, Kristen was changing Paislee’s diaper on a Tuesday morning when she felt a hard lump on her daughter’s lower left abdomen. Scans were immediately completed, and this is when Paislee’s family learned the worse of her condition.

“Paislee was diagnosed with cancer on November 28, 2023 with what we thought was Wilms Tumor,” Kristen said. “Paislee underwent a huge surgery removing her left kidney along with the tumor on November 29, 2023. They sent off a biopsy of the tumor, which came back two days later on December 1st. I remember being called into the conference room where we were told this tumor is Rhaboid Tumor and being explained to what this is. We were told the odds were less favorable.”

After learning of the diagnosis, Kristen broke down in total anguish, crying so hard that she could not breathe.

“I was panicking, thinking about the worst, asking myself if Norton’s was the right place,” Kristen shared. “Learning your child has cancer is detrimental. It’s a pain you can’t describe to anyone unless they have experienced it. All you think about is, ‘How can I save my baby? What if I make the wrong decision?’ I was scared. Our whole world was turned upside down. I never thought this could happen to my child.”

During Paislee’s journey, Paislee had VDC (vincristine [V] doxorubicin [D] and cyclophosphamide [C]) for her first chemotherapy drug cycle. Scans were done after that cycle, which were 28 days. Then, Kristen and her family learned that the cancer Paislee had was resistant to that chemo.

Next, the oncologist sought out the opinion of other doctors who advised that Paislee still undergo the “ICE” cycle, a chemotherapy combination that included drugs ifosfamide (I), carboplatin (C), and etoposide (E) phosphate. Radiation was also recommended. Paislee had ICE three times, as well as radiation to her lungs and her abdomen.

“From the beginning, we knew there wasn’t a cure for Paislee, just treatment to prolong her life,” Kristen said. “We were just in denial to it, and we always had hope Paislee would be the baby to overcome this.”

Paislee passed away on April 3, 2024, while snuggled in her parents’ arms. She was only 14-months-old.

Kristen said that losing Paislee has been the worst pain of her life.

“I laid in bed for three months straight. I have never truly experienced depression and anxiety until I lost my other half,” Kristen said. “It takes a huge toll on you. The emotions of anger, sadness, guilt, and denial are all so overwhelming. I started to get into a really dark place of dark thoughts. Paislee and I were attached to each other. She was a mama’s girl. Nothing will ever change that. Being a parent is hard, but being a parent to your baby that’s not physically here anymore is by far the hardest. I will always grieve Paislee. I will always grieve for the life she didn’t get to have, the milestones she missed, the memories we were suppose to make together – all of it.”

“Losing Paislee has changed everything for me,” Kristen continued. “My outlook on life is no longer the same. I now see life as “before and after my child died”. To be completely honest, I see people who take advantage of the life we are given and throw it all away, when I know my baby would’ve loved to have had one. I look at people who mistreat their kids and just cry, because children are such a gift and priceless. I now take everything day by day as I am trying to find a purpose in this new life of mine. I have been thinking my purpose is now to live for Paislee, fight for her and all the children, give back to the kids who have to go through such much trauma. I try to be there for parents who also have to experience this new journey and pain. We all need each other. It takes a village.”

Kristen said that while there are no right words for a parent who has lost a child, she encourages others to strong and never give up.

“I know that’s easier said than done, because I never thought I would’ve made it this far, but you have to – for you, for your family, and for your baby because YOU are their voice,” Kristen said. “Their legacy is so important to share. Share their story, their pictures, and memories you have with them. Do things in their honor. There is also no right or wrong way to grieve. There’s not a timeline. We will one day learn to “survive” with pain, but we will always grieve our child. If you are struggling with your mental health, try therapy, seek out support groups. Connect with other parents who are on this same road.”

“To the parents who currently have children battling cancer, stay strong, stay positive, and never lose hope,” Kristen added. “Your baby needs you to be strong for them. If you ever feel like something isn’t right, speak up and express your concerns. You are their advocate. Their fight is our fight.”

The Childhood Cancer Awareness Series featuring the stories of local families will continue next week with Ayden’s story.