Stand with Jade: Our Little Warrior's Fight Against Cancer

On her third birthday, our sweet Jade woke up ready to celebrate, starting the day with her favorite breakfast and an impromptu dance party. Just before leaving for a birthday outing to meet family, I (Kylee, her mom) noticed a small lump under her jaw while wiping her face. It wasn’t painful, so I thought we’d quickly get it checked. However, that single checkup changed everything, setting our family on an unexpected and difficult path.

Since that day, our lives have been filled with trips to specialists and endless tests to uncover the cause of the lump. All of these have been exhausting for our little Jade, often requiring her to fast for over 24 hours due to late-day procedures and scheduling conflicts.

After multiple scans, tests, and biopsies, Jade was officially diagnosed with a rare form of childhood cancer called Rhabdomyosarcoma on September 4th. Her tumor grew so quickly that it became visibly swollen, bulging from her tiny jaw and neck, which led to her team working with great urgency to come up with a plan of attack. The doctors feared that it would start to obstruct her airways as it grew.

On September 24th, Jade went through an intense 5.5-hour surgery with two top surgeons from Huntsman and Primary Children's working together to remove as much of the tumor as possible while trying to protect critical facial nerves, arteries, and structure. Once in surgery, the doctors were shocked at the tumor’s size (roughly the size of a large egg)—it had grown along her tongue and near sensitive mouth nerves, making the surgery even more delicate. They faced a difficult decision: removing the tumor entirely would have required cutting a nerve that controls her tongue and lower lip, leading to long-term facial impairment. Instead, both surgeons agreed to protect her nerve while being as thorough as possible in removing the tumor, sparing her from serious facial and tongue movement issues.

Jade’s post-surgery recovery has been challenging. Although the doctors were able to save her nerve, the surgery left her with temporary paralysis in part of her tongue and lower lip, making it hard for her to speak and eat. The procedure was exhausting on her little body, and her voice box was impacted, causing her additional discomfort. She now faces a long road of healing before see can regain full movement in her tongue and face.

Although an initial analysis during the surgery suggested that all the cancer had been removed, we anxiously waited for the final pathology results to confirm the next steps in Jade’s treatment plan. The hardest news came when the final results showed that cancer cells remained close to the nerve, meaning she would need an extensive treatment plan including both chemotherapy and radiation. Jade is now undergoing weekly chemotherapy sessions, which require inpatient hospital stays. She has also started an intensive radiation schedule of five days a week for the next couple of months. Her chemotherapy treatments have led to a change in taste buds and appetite, so she also has an NG (feeding) tube for daily feedings. The NG tube will also come in handy as we are anticipating throat and mouth issues as we get further into radiation treatment. Each radiation session requires anesthesia to keep her completely still, an exhausting and invasive process for such a young child. She had a custom radiation mask made to keep her face, head, and neck in a very precise position during treatment. Despite our and the doctors' hopes that the mask would work perfectly, there have been complications with her breathing during her procedures. Unfortunately, the doctors have needed to intervene to help her breathe. We are hoping they can figure out a solution and not have to intervene each time, as it can cause long-term side effects with her voice box and throat. Despite the difficult side effects, her doctors and nurses are doing everything they can to manage her pain and support her through this fight.

As Jade continues her battle, she will need ongoing care, including future reconstructive surgeries for her jaw, extensive dental work, and regular therapy to aid her physical and emotional recovery. She has already started her physical therapy as the chemo has altered the way she walks and the way her muscles work. This journey is incredibly demanding, and Matt and I are doing everything we can to keep her spirits up and make her as comfortable as possible.

We are starting this GoFundMe to help cover Jade’s medical expenses, the costs of her ongoing treatments, and our family’s needs during this difficult time. Donations will go directly toward her medical expenses, therapies, upcoming surgeries, and the many additional costs that come with her treatments and recovery. Due to a genetic condition, some of the therapies typically used to help with pain and healing both during and after treatment are not available to her so she will use alternative (more expensive) options to help manage and reduce symptoms.

Any support, big or small, means the world to us. Please join us in supporting Jade’s fight, bringing hope to her journey, and helping our family focus on her care and comfort.

Thank you for being a part of Jade’s fight. Your support is a source of strength and hope for us all. #ButterflyStrong

We will do updates here, but if you would like more regular updates, you can follow her story on Instagram: jadebutterflymaren

If you wish to donate directly you can do so on Venmo at the username: KyleeMiller13