Our hope is that in the future kids not only have a great chance of surviving, but LIVING without the terrible side effects today’s childhood cancer treatments cause.
Violet's Story
Diagnosis and Early Treatment
Violet’s story is one of remarkable strength, resilience, and love. Her life took a sharp turn when she was diagnosed with Atypical Teratoid Rhabdoid Tumor (ATRT) at just four months old. On Wednesday, September 15, 2021, her pediatrician noticed her head had grown a little too much too fast, and sent us for a CT scan the next day. We were barely home from the scan on Thursday when her doctor called to tell us they saw a mass, and we needed to head to the emergency department immediately. By Friday, Violet was being prepped for a brain tumor resection and we were thrust into a world of endless uncertainty.
The next days and weeks were brutal. Violet’s IVs were near impossible to place. At one point, she had no IV access because all of her tiny little veins were blown. The nurses had to insert a central line through her neck. It was beyond terrifying. During this time, Violet spent one night on a non-oncology floor, which will forever stand out as one of the worst nights of my life. She went from constant 1:1 care in the PICU to a floor where it felt like there was no nurse in sight. They did heel sticks every few hours to get her labwork done. Violet could not cry - we aren't sure why - so we relied on her facial expression and heart rate monitor to know when she was in distress. This night was torture for all of us.
The next day, Violet was admitted to the oncology unit, which would be our home for months to come. Pretty soon after, she had two additional surgeries. One for a central line and the other a shunt to help fluid drain from her brain. She also went through several scans, tests, and a lumbar puncture all to gather information on how best to proceed with treatment.
On October 8, 2021, Violet's first round of chemo began. She followed ACNS0333 treatment protocol, which included 3 rounds of induction chemo followed by 3 rounds of high dose chemo with a stem cell transplant. When she was older, she would have radiation but because she was so young, she needed the chemo to get her to at least 1 year old. This is due to the horrific long-term effects radiation can have, especially on the brain.
Just a couple of weeks after chemo began, Violet became hypothermic and lethargic. The highest measurable temperature they could get was 91 degrees. This happened while her NanaGram (Nana Faith and Grammy Alisa) were at the hospital with her and to say everyone was terrified is an understatement. They called the rapid response team and admitted Violet back to the PICU where she would stay for 2 nights. The first round of chemo was everything we feared. She was so sick, and no amount of nausea medication could help. She developed mucositis, which made it difficult for her to breathe. All the while, she couldn’t cry or scream to tell us how miserable she was. It was mental warfare, with Brandon and I constantly watching the heartrate monitor to know when to ask for her pain meds.
On November 4, 2021, Violet got to go home for the first time in 7 weeks. She went home on countless medications, TPN (nutrition through IV), nebulizers, constant oxygen, and a pulse ox monitor. After home health dropped off the boxes of supplies we would need for our short 4 day trip home, we wondered what we were thinking trying to do this on our own. Of course, it was so worth having her home.
A Glimpse of our Time at Home
A pediatric cancer diagnosis is something that makes you question everything you thought you knew about life. There are no words that truly describe what hearing those words about your child feels like. Everything in your family’s world stops. You become prisoner to cancer, the treatment, and the terrifying reality your child is about to endure.
And it is anger. Deep rooted anger from the lack of funding and research in this space.
Holidays in the Hospital
The first and second round of induction chemo were so hard on Violet, we made the decision to skip the third and move onto the second half of treatment; high dose chemo with stem cell transplant. Her first round started on December 16, 2021. Throughout this period, Violet’s milestones were marked not by typical childhood experiences, but by hospital stays and medical procedures. Her first Halloween was spent under the sterile lights of a hospital room, her costume - provided by her Auntie Shannon - offered a faint touch of normalcy amid the chaos.
Thanksgiving, Christmas, New Year’s, and Easter all came and went, each holiday punctuated by the beeping of machines and the soft hum of medical equipment. But you better belive that Nanagram had this baby dressed up for all the things.
Relief was brief
On April 5, 2022 Violet was discharged from her last round of chemo. Unfortunately, due to side effects post-chemo, she did end up back in the hospital for her first Easter. Fitting, as she'd spent every other first holiday there. Just a few short weeks later, we headed to Cincinnati to start her 6 weeks of proton radiation. During that time she had her first birthday and we got to spend at home!
Radiation went well and, on June 2, 2022, Violet had her last radiation treatment! We celebrated with a trip to the Cincinnati Zoo. So began our new normal, taking Violet to multiple appointments per week. Treatment left her with many delays, most that she still faces today. Each week Violet had her regular doctors' appointments, as well as physical, occupational, speech, and vision therapy sessions.
Just as we were beginning to breathe a sigh of relief, on September 2, 2022 – a year later almost to the day – Violet’s 3 month scans revealed a rhabdoid tumor of the kidney. Once again we were devastated, our lives again coming to a screeching halt. She had surgery to remove the kidney on September 15, and we then had to make a decision on what to do next. We were shocked at how LIMITED the research to help guide us at this point was. The studies we were looking at followed ~5 kids, none of which had the same clinical presentation as Violet did. Putting her tiny little body through chemo and radiation again so soon was very risky but the question remained - was it riskier to not do it?
With guidance from Violet's oncologist and an expert in this type of tumor who happened to be in Cincinnati, we decided to move forward with chemo and radiation at Cincinnati Children’s with the intent to watch her closely for signs that she was not tolerating the treatment. Again the protocol would be a combination of chemo and radiation but this time, radiation would come first.
Positive news, Halloween was spent at home this year, and we made up for lost time with an assortment of costumes.
Chemo started at the end of October following two surgeries to get her port placed. The plan was to do as many rounds as we could, but tailor it to Violet and let her show us what she can handle. She ended up completing 6 rounds of chemo and the full radiation recommended, as well as more than 20 platelet transfusions and 9 blood transfusions. We kept having to delay the start of the next cycle due to her counts (mostly platelets) not recovering fast enough. During cycle 3 she needed platelets 6 times in 11 days. We questioned if this is her body telling us she cannot handle this, but ultimately made the decision to keep going because neutrophils and hemoglobin were stable.
After Violet's 6th round of chemo, she had scans and her heart echo showed an abnormality. This was one of the main side effects we were monitoring for, because this protocol included Doxorubicin - a drug that is toxic to the heart. At this point we considered her treated and would “hope for the best”.
As a parent, it is a desperation that you simply cannot explain. Of wishing it was you instead of them.
Onward
As of March 2023, we transitioned to off-therapy surveillance meaning that, every 3 months, Violet undergoes an MRI of her spine and brain, as well as a CT of her chest, abdomen, and pelvis, and a lot of bloodwork. She also goes to physical therapy, occupational therapy, and speech therapy every week, and regularly sees a whole slew of doctors: ophthalmology, audiology, neurology, cardiology, endocrinology, physical medicine & rehab, neuro-oncology, sleep medicine – there's likely more that I am forgetting.
Today, Violet is thriving. She just started preschool in August of 2024. She is learning to use a wheelchair to be able to move independently, and is gaining new skills and getting stronger every single day. At 3.5 years old (September of 2024), she is unable to walk, talk or eat by mouth. We don't know what Violet's future holds, but we do know that she is a miracle. She is an angel child that loves like no other and teaches and inspires love in everyone she crosses paths with. She hugs fiercely and never wants to let go. She has the most on point sense of humor and a beautiful laugh. She truly learns something new all of the time, and I cannot wait to see how far she goes.
AND Violet deserves better. She deserves to have had treatment options that did not rob her from being an independent 3-year-old girl; treatment that put her through absolute hell for the first 2 years of her life. Violet’s journey has been marked by unimaginable pain, but it has also been illuminated by her remarkable strength and the deep love of her family and her village.
Her story is a testament to the power of resilience and the spirit of a child who has endured more than most adults in her 3 years of life. She continues to lift everyone around her through her love, spirit, and amazing hugs.
We love you, Violet girl. You are an inspiration to all of us and that is why we are here. <3
Partnering with CureSearch
Our family has chosen to partner with CureSearch because we are passionate about seeing change in the lack of funding for pediatric cancer research. It was important to us to partner with an organization who not only voices that passion, but puts action behind it.
CureSearch is personal to us because we used one of the studies CureSearch funded to guide Violet’s treatment after her ATRT diagnosis. CureSearch’s logo is seared into my brain because the logo was in the top left corner of the treatment plan Brandon and I read over and over as we were deciding a path forward for Violet. We referenced it often through chemo to help us understand what toxicities to expect and how to best prevent that from happening. As pharmacists, understanding how harsh chemotherapy drugs are was both an asset, to help us to be best prepared to make adjustments based on how she responds, and a detriment, as it brought us great heartbreak and anxiety knowing how awful both short-term and long-term side effects would be.
Without the ACNS0333 protocol that CureSearch funded, Violet may not be here today.
Funds raised will help seed a CureSearch Young Investigator award. Learn more.
Our Mission at Violet's Village
Violet’s Village of friends, family, and strangers have wrapped us in prayers and love from the beginning of her diagnosis. That love is what got us through many hard moments over the course of her two diagnoses and two years of treatment hell. The support of this village has been humbling and we are forever grateful.
The mission of Violet’s Village is to raise awareness and funding for ATRT research, and to partner with a reputable organization who is relentlessly committed to finding better treatment options for kids diagnosed with cancer. Our hope is that in the future kids not only have a great chance of surviving, but LIVING without the terrible side effects today’s treatments cause.
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