In February 2009, Lexi will be ending one long chapter in her short life and begining a new one. Lexi will receive a kidney from her mother, Maria, ending her body’s dependence on dialysis after a condition known as Wilms’ tumor caused her to lose both of her kidneys.

Wilms’ tumor is a rare kidney cancer that primarily affects children. Also known as nephroblastoma, it’s the most common malignant tumor of the kidneys in children. Most cases of Wilms’ tumor occur around age 3, and rarely after age 8 (http://www.mayoclinic.com). However, Lexi was only 17 months old.

Symptoms of Wilms’ tumor can be hard to detect as some can be common among infants, such as fever or reduced appetite, however the most telling sign is feeling an abdominal mass. When Lexi’s daycare provider felt a mass, she was brought in to her doctor and was diagnosed just two days later.
Most Wilms tumors are unilateral, which means they affect only 1 kidney. Usually there is only one tumor, but in 5% to 10% of cases there is more than one tumor in the same kidney. About 5% of children with Wilms tumor have bilateral disease (cancer in both kidneys). (http://www.cancer.org)

Lexi had bilateral disease and one of the tumors was quite large. After chemotherapy failed to adequately treat the tumors, Lexi was rediagnosed with Rhabdomyomatous Nephroblastoma (a more aggressive Wilms’ tumor) and both of her kidneys were removed in separate surgeries. She continued to receive chemotherapy for residual cancer cells and to prevent potential spreading of cancer. She was also set up to receive daily peritoneal dialysis at home to replace the blood cleansing function of her lost kidneys.

Lexi completed chemotherapy in February, 2007, but still requires daily dialysis and vigilant monitoring, including bi-weekly lab draws, in preparation for her upcoming transplant. Lexi was referred to PHS, who worked with the family to arrange a convenient time to come to the home to do lab draws and provide IV therapy and enteral feeding when necessary.

Maintaining a “normal” lifestyle was important to Lexi’s family. “The PHS nurses worked with us to set up a time to do Lexi’s lab work. Both my husband and I have to work so Karletta (PHS Infusion Nurse) comes out to see Lexi early in the morning so that we are able to live the rest of our lives as normally as possible,” says Lexi’s mom, Maria. “Working with PHS helped us feel like we were more in control of managing all aspects of Lexi’s care.”

The days and weeks following Lexi’s transplant will be crucial to the success of the procedure. PHS will still be there to offer nursing care and support saving the family the task of transporting a medically fragile child to the hospital.

“It has been such a pleasure to watch this family adapt to a life changing diagnosis of cancer,” says Jean Stumpf, PHS Nursing Supervisor and former case manager for Lexi. “Lexi has gone from a frightened baby who cries ‘all done…all done!’ the moment a nurse entered the home to an interested and willing participant in her care. She even ‘draws blood’ on her nurse with pretend needles now.”