The first children in the country to have genomic screening

April 22, 2019
Victoria

 

Victoria Thompson has been helping her doctors identify better treatments for neuroblastoma since she was 18 months old. In her short life, she’s already been part of two clinical trials at MUSC. She was one of the first children in the country to have genomic screening as part of her treatment for high-risk neuroblastoma. Now she’s in a new trial for a drug that’s been shown to keep tumors from coming back. Her mom, Jennifer, recently answered a few questions about Victoria’s story.

Tell us what brought Victoria to MUSC.

Victoria was 18 months old when she was diagnosed with stage IV neuroblastoma in October 2016. Her sister Ressie was only 3 months old at the time. It all began with recurring fevers with no other symptoms. We took her to the doctor every time she got a fever and they would tell us she was getting a virus. I also expressed my concern with her tummy looking swollen but we were told toddlers tend to have larger tummies. Finally, after about a month or two, they took blood samples. The results came back with what they thought was an autoimmune disease, but then Victoria could not get comfortable enough to sleep one weekend so they ordered an ultrasound. That is when we were told to head to MUSC immediately because she had a very large tumor on her right kidney. 

Can you tell us a little more about Victoria’s health journey and your experience at MUSC Children’s Hospital?

Victoria's first admission lasted two weeks, which consisted of a lot of pain management, biopsy, and scans of the tumor so they could name the cancer, putting a port in and starting her first round of chemo. She was given a very extensive treatment plan that included five rounds of chemo, stem cell harvest, surgeries, stem cell transplant, 20 rounds of radiation, immunotherapy, and a study drug. The treatments were not pleasant but the immunotherapy was by far the roughest.

Throughout Victoria's time in and out of the hospital whether it was for treatment or admittance due to illness, we were always greeted and treated with warmth and love. Everyone at MUSC Children's hospital quickly became our second family. The child life specialists were great at getting Victoria's mind off the medical stuff and into play. The minute Michelle (Dr. Michelle Hudspeth) would walk in Victoria's room she would point at her bag knowing there was a surprise inside! The nurses are AMAZING! They would spend a lot of time playing with Victoria and talking with me, and trust me, adult interaction is very much appreciated when you are in the hospital for days on end.

Victoria is part of Dr. Jacqueline Kraveka’s clinical trial. Can you tell us a bit about the clinical trial? How is Victoria doing today?

The trial Victoria is in with Dr. Kraveka is a tough one but it is the best, most promising plan for Victoria to be cancer-free. Dr. Kraveka did not hold back when expressing how hard it would be on Victoria. After all treatments were finished, Victoria began taking a study drug called DFMO (difluoromethylornithine) and she will continue taking it for two years. It does not seem to have any side effects except for thin, slow-growing hair.

Today, Victoria is doing great and thriving! Victoria will turn four on March 30. She just got her first clear scan a couple of days before Christmas, which put her on a schedule of every six months for scans and three months for labs. She attends school a couple of days a week and LOVES it. There is not a day that goes by that Victoria is not dancing, singing, smiling, and just being a very happy little girl. She likes to play doctor and she likes to go to clinic and play in the playroom and see her favorite doctors and nurses.

What are you and your family most excited about in the new MUSC Shawn Jenkins Children’s Hospital?

With the new hospital, we are looking forward to all the possibilities for patients and their families like the oncology clinic being on the same floor and in the same building as the oncology unit. There will be a separate play area for children who are immune-compromised. That is huge because when Victoria was admitted several times for low numbers she was confined to her small room for days -- sometimes a week -- at a time. It will also be nice to have the outdoor space so patients can get fresh air and sunshine. In addition, I hear the oncology unit will have one of the best views; This is great because those patients usually spend the longest time in the hospital. During Victoria's stays one thing we always did was let her stand in the window, decorate it, and look at what was going on outside.

Keywords: Patient stories