2018 Honored Patient: Elsie
Each pediatric cancer journey is uniquely different and deeply personal. Different experiences result in different blessings. For young Elsie and her family, there was the complete joy of conquering her initial cancer diagnosis. Then came the less obvious, but important, task of effectively addressing a disability resulting from her cancer treatments.
Elsie has been able to utilize a portion of PTATC research dollars that are focused on rehabilitation treatment after chemotherapy. Elsie’s mom, Anna, shared a very honest and forthright observation when families are diagnosed with cancer, particularly children.
“A cancer diagnosis for your child splits your life in two. There’s everything that happened before the diagnosis. And, there’s everything that happens after the diagnosis. For our family this day was Thursday June 19, 2014.”
At Elsie’s 3-year check-up, her pediatrician felt an irregularity while she palpated Elsie’s stomach. After a series of x-rays and scans it was determined that Elsie likely had a Wilms tumor, a type of kidney cancer. They met with Dr. Johanna Perkins, who would become Elsie’s primary oncologist, and Dr. Lindig, the surgeon who would remove Elsie’s tumor four days later.
“We went home stunned and devastated. Elsie had been entirely asymptomatic. There are no words to describe the terror of knowing your child’s life may be in danger. We spent the weekend trying to get our footing, arranging time off of work and spending time together as a family,” continued Anna.
Elsie’s surgery went well. The surgeon was able to remove the tumor in its entirety, as well as nearby lymph nodes to see if the cancer had spread. The diagnosis they received later was Stage 1 Wilms tumor, favorable histology. Plans were for Elsie to have a 20-week chemotherapy protocol with no radiation.
Elsie was incredibly resilient through out her treatment and had relatively minor side affects. Her blood counts dropped, but never to the point were she needed infusions, delayed treatments or isolation. She attended preschool three mornings a week, only missing days when we were in clinic.
About 3 months into Elsie’s treatment she showed symptoms of significant neuropathy or damage to the nerves in her hands and feet caused by the chemotherapy drug Vincristine. Anna best described it as “Elsie’s feet got 'floppy' affecting her gait and her hands weakened so much that she had a difficult time opening them. Because physical therapy had been following Elsie since the first week of treatment we caught it quickly. She moved to weekly PT and OT sessions and was fitted for orthotics.”
Elsie completed her treatment on October 30, the day before Halloween. She had her end of treatment scans 3 weeks later.
“They showed she was NED -- no evidence of disease!,” said Anna. “When Dr. Rawas came in the room and reported that the scans looked good, Dan and I both just about collapsed with relief. Life post-treatment has presented some challenges but we are so incredibly happy and relieved.”
Elsie is now over three years post treatment and remains cancer-free.
“We know how blessed we are. Elsie’s cancer had a very specific and clear protocol, she responded well to it and we believe that she is cured. When the National Institute of Health only dedicates 4% of their dollars to pediatric cancer research, it is imperative that events like PTATC fund critical research being done at hospitals like Children’s Minnesota.”
Anna’s view of the care and expertise found at Children’s Minnesota are not unique.
“Based on my extensive experiences, they are at the forefront of treating long-term physical effects from chemotherapy. The therapists were on top of them from the first week of treatment. Elsie was not a textbook patient. She still requires orthotic leg braces and physical therapy. But we believe she is going to recover from the disability that chemotherapy left her with. Lynn Tanner, her physical therapist has been her champion the whole way. Lynn knows Elsie’s feet and her gait better than anyone reasonably should.”
“Thank you from the bottom of my heart to everyone associated with PTATC. Your work has helped fund the research that Lynn does that has helped make Elsie’s recovery from the long-term effects possible. This is in addition to the research being done to find better treatments and cures for all people.”
Healthy blessings abound.