Kinsley was diagnosed two days after her 2nd birthday with Wilms Tumor. She was not symptomatic (aside from constipation which she had always struggled with). On her 2nd birthday, I was sliding her off of my lap and felt the lump under her rib cage. We saw her general practitioner for an appointment two days later and that evening we were admitted to the hospital. After CT scans, ultrasounds, and blood work were then diagnosed.
Kinsley’s case is a bit rare and required lots of research by her oncologist and surgeon teams. On her right kidney was the mass, and on her left kidney were lesions that were growing. That is what put her as a stage 5 because it’s bilateral. Typically Wilm’s Tumor only affects one kidney.
We immediately began chemo and after 12 weeks, we went in to have the mass on her right kidney and the surrounding area of that kidney removed. We stayed for 8 days and she came home with the drain attached as her surgery site was still draining. They weren’t happy with how that kidney was draining urine to her bladder so we went in to have a stint put in to reroute the urine properly.
At that point, they saw that her kidney was not viable and needed to come out. We then went back in and had the remainder of her kidney removed. She then underwent three more strong, spaced out chemo treatments. We will get a scan of her remaining kidney in 3 weeks when they will measure the remaining lesions. Every 3 months for the next 2 years we will alternate CT scans and ultrasounds to continually monitor those lesions to make sure they don’t develop into tumors. These next two years will be a bit nerve-racking as far as hoping for the lesions to shrink/go away and not grow but doctors feel once we clear that two-year mark chances of relapse/growth are slim.
Overall, we’ve maintained as much normalcy as possible for her. Due to the chest port where her blood is drawn and chemo is administered, she cannot get her chest wet so bath time has become a challenge as Kinsley loves water. We flush her port daily and change her port dressing every three days.
We’ve kept her quarantined during this COVID pandemic so she hasn’t been anywhere aside from doctor appointments and hospital stays since April. COVID was rough for us as only one parent was allowed at all appointments and procedures.
Kinsley has been extremely strong throughout this experience. She has surprised her doctors, nurses, and surgeons with her quick recovery and big smiles through some of her worst days. She is our hero!
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