2020 Little Warrior: Natalie Huston
Natalie was diagnosed with high risk neuroblastoma on November 1, 2019. Things started with a simple low-grade fever in late October, but a week or so after the onset, she began to complain of other pains in her legs, abdomen, and back. Following multiple trips to the doctor and several tests, a mass was found in her abdomen. We were sent directly to the ER at Children’s Hospital in Minneapolis for further workup and, ultimately, her diagnosis a few days later. In addition to the primary mass, she also had lesions in multiple other areas in her abdomen, along with disease in her bone marrow. The team at Children’s began chemotherapy the day following confirmation of her diagnosis, and although we were grateful things moved so quickly, it was also a shock to our family to move so abruptly from thinking Natalie likely had a minor infection to hearing the diagnosis of high-risk neuroblastoma and then moving into treatment so rapidly.
Natalie’s treatment is expected to take about a year and includes 6 rounds of inpatient chemotherapy, surgery, stem cell harvest/transplant, radiation, and 6 rounds of immunotherapy. She has now completed the initial 6 rounds of chemo, stem cell collection, surgery, and is currently going through the transplant process at the U of M. The periphery lesions have cleared with chemotherapy, and the surgeon successfully removed 100% of the remaining primary abdominal mass in February, which was a daunting task. However, we learned just weeks prior to the scheduled stem cell transplant that Natalie still has disease in her bone marrow. Because of this, her medical team has recommended tandem (back to back) stem cell transplants rather than a single one, which will extend her treatment a bit. Natalie was admitted to the U of M’s bone marrow transplant unit on April 21st, and we expect to be in the hospital through mid-May for the first transplant. Then, after a period to rest for her body to recoup, we will be returning for the second transplant in June.
We are now at about the mid-point of Natalie’s treatment, and the past 6 months have been scary and challenging for our entire family. In addition to the planned hospital admissions, Natalie has been hospitalized an additional five times due to fever or other complications, and our family has spent a lot of time apart and dealing with a lot of uncertainty. Covid has added new challenges to the dynamic, so we are also having to cope with those pieces – more restrictive isolation and precautions, home schooling for our son, and the added worry about any potential exposure to Covid. We are blessed to have an extraordinary support network of family, friends, neighbors, and coworkers helping us through this journey in different ways, so having to cut off many of those contacts has been difficult as well.
Natalie is handling everything like a champ thus far – we knew she was a strong and resilient little girl going into this, but her upbeat attitude continues to impress everyone around her. She remains more active and playful than we could have ever imagined she would be capable of, given everything her body has gone through. Even at her lowest points, she handles things with a strength and quiet grace that is nothing less than amazing, and her smiles remind us every day that we are blessed to have such a remarkable little girl!
During the month of June a portion of the proceeds from shopping INDY Gear and Apparel will go directly to Natalie and her family. Shop now and be sure to mention her name in the comments section at checkout.