Honored Kid

Claire V.

Age 5
Claire V. Kid Photo

Location

Fairfax, MN, US

Diagnosis

Ewing sarcoma

Date of Diagnosis

July 2023

Status

In treatment

Treated At

Gillette Children's Hospital and Clinics Children's Hospitals and Clinics of Minnesota Mayo Clinic Rochester

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My Story

In June of 2023  Claire slipped on a slip and slide. She got up like any 4 year old would and went about her day. A couple days later she started to kinda walk funny like she was protecting her back. We chalked it up to her fall. So after a few days we took her to the chiropractor thinking something was out of whack. He examined her and he stated that her hip was tilted. He adjusted her and she was walking better. A week later her legs started to spasm and the pain wasn’t getting any better. So I brought her to her primary doctor. The doctor did an x-ray and it showed nothing was broken but showed her muscles were tight and pulling her spine in the wrong direction. The recommendation was PT. So we started Pt when they examined her they said the same thing that her hip was tilted. Things were getting better with the stretches but then she started to complain they all hurt. We thought she was just being dramatic because she didn't like taking the time to do them. A week later this past Wednesday she started having full body spasms that got worse at night To the point she wasn't sleeping. She was also having trouble going to the bathroom. She came to work with me Friday and the spasms just wouldn't stop. So I decided to bring her back and I left work and went straight to the clinic. I called Brian and he met me there. After she tried to examine her Claire's spasms just wouldn’t stop. They always got worse the more worked up she got. They chalked it up to being stress related and her way of dealing with the pain in her back so she sent us home with some Oxy and Benadryl to help her sleep. Claire slept a little better Friday night. Saturday came and she walked over to my room and woke me up when she got up for the day. We got ready for her Disney Princess party and we left. By the time we got to Mankato she asked me to carry her cuz she couldn’t walk. I carried her and then set her down to walk a little. She was kind of wobbly but walked. We stayed at the party but she was just off and not acting like herself so we left. I called Brian and told him to meet me back at the clinic. We got to express care after they examined her. They were saying the same thing. That these spasms were stress related they were about to send us home again. But for some reason she decided to look at her x-ray again and thought she saw that something was wrong with her hip. So they sent us to have a CT scan. After they looked at her scan they sent us straight to Children's to have an MRI. They told us they couldn't tell if she had an infection or a mass. We got here to the ER. They took blood and that all came back normal after a couple hours they finally admitted us to the 7th floor. After getting settled in Claire had a terrible night of pain the worst I have ever seen. They woke us up bright and early for her MRI. As we waited for the results we kinda knew what they were going to tell us since we were on the 7th floor. When the doctor came in she delivered the news that our healthy little girl has a tumor in her back that was pressing on her spinal cord also a few spots on her lungs. At first they thought it was in her spinal cord and in between her spine. So they moved us to PICU to wait for her surgery she was going to have on Tuesday. Sunday night was even worse than Saturday. She was screaming in pain and complaining her legs burned. So after the rough night they moved her surgery to Monday afternoon. Before her surgery her neurosurgeon Dr. Nagib met with us and showed us her scans and we got a little good news that it wasn't in her spinal cord, it was just pressing against it. Monday at 12:00pm they took her down for her back surgery. They had to take apart her spine to get at the tumor and put it back together. The surgery alone was almost 3 hours. Once they brought her back from surgery they told us they were able to get more of the tumor out then they originally thought. This is where Claire’s story begins . She was diagnosed with metastatic ewings sarcoma.  She has been working very hard to get her mobility back. She has just started to walk on her own for the first time since July. The tumor also caused her not to be able to potty by herself. Cancer has taken so much from her but she is a determined little girl. If you would like to know more of her story follow her caringbridge 

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