Kids Cancer Alliance

In June of 2022 Levi started to just generally not feel good. We spent about four weeks trying to figure out what was going on. We went to our pediatrician a number of times and even a local emergency room where we were assured that he was completely healthy, just having normal stomach issues. 

By Tuesday, July 12th Levi had become weaker and more unsteady on his feet as well as he had developed a lazy eye which sent all the red flags up. We went back to the pediatrician who immediately sent us to Kentucky Children's Hospital. By the end of that night the team had confirmed that there was a very large mass blocking the flow of his cerebrospinal fluid and causing all the symptoms we had been seeing. 

Thursday, July 14th Levi underwent a ten-hour surgical resection of his tumor and a very lengthy MRI which would further tell us that the surgical team was not able to get all of the tumor and he had metastases down his spine. Levi stayed sedated and ventilated for two days. When they finally woke him up our relief was overwhelming that Levi had survived surgery and was doing very well considering what he had been through. From there we had a short healing period at home before admitting to Cincinnati Children’s hospital for six-weeks of radiation. He was admitted on August 16th which would have been his first day of first grade. The team at Cincinnati was very compassionate and caring. They took amazing care of us and Levi for the entire stay. 

After radiation our treatment moved back to UK’s DanceBlue Hematology and Oncology Clinic where we would admit every four weeks for chemotherapy for the next 8 months. During treatment we most certainly had our ups and downs but Levi was consistently the bright spot in almost everyone’s day. He would attend any activity they offered and was usually first in line when the playroom opened. He also developed an extremely close relationship to several of UK’s volunteer Canine Counselors. We also had several milestones during this time, Levi lost his first tooth while hospitalized as well as celebrated his 7th birthday while inpatient. 

One of our best bright moments came towards the end of treatment when we were made aware of a family retreat put on by the Kid’s Cancer Alliance at Great Wolf Lodge. Levi only had one inpatient chemotherapy treatment to go but he felt good enough to go and enjoy the weekend. We had the very best time at Great Wolf Lodge. It was the first getaway of any kind that we had had since diagnosis the year before. It was a time to relax and also for Levi to play hard and remember how to be a child. Somewhere along the way he had grown up way too much. 

Though Levi was still recovering from a years worth of treatment he loved camp. His favorite parts of camp were the petting zoo that visited and being tucked in each night by the nurses.   He made some very good friends and though he wasn’t as strong or as fast as the other kids he learned there were other kids out there who had fought the battle and won. He found a community of peers and support.

Sincerely Thankful,

Danielle, Levi's Mom