Kaydia's Story

Kaydia is a 12 year old girl who was diagnosed with an Aneurysmal bone cyst in her Sacrum on August 2nd 2021. Kaydia had been limping and complaining of hip and left leg pain for months and we thought it was growing pains. We eventually took her into her pediatrician in January 2021, who took x-rays and ordered physical therapy. The x rays didn’t show anything abnormal. The physical therapist recommended a trip to her neurologist to get some imaging done because he hadn’t seen a gait like hers before. 

We had a tele visit with her neurologist in May who wanted to do and MRI of her brain to her pelvis to check for a few things. During the period of January to the appointment with him Kaydia also started having hearing loss so we were making sure everything was ok. We were scheduled for an MRI on August 2nd 2021 with an appointment with her neurologist right after. Her neurologist took us in the room and explained that she had a large growth in her pelvis on her sacrum. He said they believed that it was an Aneurysmal bone cyst (ABC) and that we would need to see someone to get it removed.

We spent hours and days researching this and there isn’t a lot of information about these because it’s less than 1 in 100,000 people that are diagnosed with these a year. We went to a few consultations with different doctors. We still weren’t satisfied. I joined a group on Facebook for people affected by this tumor and reached out to a few and read a ton of different stories, that’s where I found Dr.Murakami at Nationwide Children’s Hospital in Columbus, Ohio. 

We had a phone consultation with him after sending over all of Kaydias records and imaging. He explained different treatments available for these, but didn’t feel surgery was an option due to the size and location of Kaydias. He does a treatment called Sclerotherapy that shows a ton of success with these tumors. He injects the tumor all over with doxycycline and albumin to hold it in place. The doxycycline is to help shrink the tumor and promote new bone growth where the tumor has eaten a hole in her Sacrum. She had her first treatment in October of 2021 where they also biopsied it and that came back benign! Kaydia just had her 4th treatment with him in May of 2022. We’re going there every 2 months. We’re not sure how many more she’s going to need. 

Although she isn’t showing huge signs of improvement yet, he feels like we’re going to beat it and turn the corner soon. She still has a long road ahead of her and is still limited on activity as she can’t do anything like running, riding a bike or anything hard impact because of the risk of fracturing if she falls. She had sciatic pain a lot the first few months because the tumor was pushing on that nerve. We’re hopeful that these treatments will get her back to her normal self and healing. She will have to have repeat imaging for up to 5 years after treatments to make sure it doesn’t grow back.