Help Jess Smile Again

In March of 2020, while the whole world was faced with the unknowns of a worldwide pandemic, my sister, Jessica, received devastating news. Jessica was 6 months pregnant and planning for her future. Her long awaited, forever home was in the process of being built and dreams were coming true for her and her two young kids, her then boyfriend, Matt and his son and the baby that would bond them all. As with most pregnancies, Jess began to experience some strange symptoms which she initially brushed off, but then her teeth became too loose, and her eyes and nose wouldn’t stop running, her gums were bleeding and then there was a lump on the roof of her mouth that could also be felt inside her nose. All of this led to a trip to the dentist that would forever change her life. An x-ray revealed a mass growing in her upper mandible and biopsies confirmed the worst. Cancer. A rare bone cancer called osteosarcoma.

The world had literally just come to a stand still. A virus that no one knew about took all precedent and those with any other health condition had to take a back seat. A tragic and unfair reality that left many scrambling for care, with Jess being one of those newly diagnosed people. Jess’ condition was very serious and time was of the essence. A resident of Tampa, Florida, Jess had many local care options available, but not every facility is willing to work with every insurance company. After much consultation and searching a plan was hatched and quickly executed. On May 15, 2020, Jess would deliver her sweet baby girl, Ella Mae, at 33 weeks via cesarean, at a local hospital. She was told she had to act quickly and the best way to save her life would be for her daughter to be born prematurely. Ella remained in the local hospital for 3 weeks, cared for by the incredibly kind and compassionate NICU team, while Jess was transported to a hospital in Miami over 5 hours away.

On May 28, 2020, in Miami, the following graphic, life saving procedure was performed. Jessica’s upper jaw was removed, along with her top teeth, as well as half of her septum. The good news was that all of the cancer was removed in one fell swoop, the bad news was that the cure would cause incredible life altering, physical and mental pain. In order to mitigate disfigurement and to provide a place for future dental implants, reconstructive surgery was required. This involved removal of the left fibula to create a new jaw bone as well as calf skin and muscle harvesting. After surgery Jess recuperated in the ICU, all alone, with no visitors allowed. There was no one to advocate for her and she was completely at the mercy of overworked caretakers during the peak of Covid paranoia. Connected to worried family members by staying on FaceTime but unable to communicate, Jess spent 4 days in the ICU. On day 2 of her stay an emergency bedside procedure was performed, while she was awake and alert, as one of the skin grafts failed. There was no one to clean Jess up afterwards. There wasn’t enough nursing staff. Jess suffered alone, in a strange ICU bed, separated from her infant daughter, recovering from not only the horrific but necessary procedures but also a c-section and everything postpartum. The emotional and mental toll was devastating.

Once released from the hospital Jess made the long journey home, where no medical home care was provided. Out of state family members and local friends took shifts to provide care for the now family of 6. Jess was left with a hole in her soft palate that opened directly into what was left of her nasal cavity. Jess was put on a feeding tube for 2 weeks and then for reasons unknown to her the tube was removed before her healing was complete, requiring Jess to switch to a liquid/soft diet. Jess was unable to get the nutrition that was needed for her healing body and struggled greatly with trying to take in nourishment, often choking, with liquid and soft food finding its way into her nasal cavity. The fact that a feeding tube was not kept in during her full home convalescence caused many setbacks in her recovery. The days were long and excruciating.

Over the next 18 months, Jess underwent one procedure after another to repair and close the hole in the roof of her mouth, as well as prepare her new jaw to receive dental implants. Each operation seemed to cause more harm than good. Jess’s doctor made many promises. He promised her that she would never miss her fibula. He promised her that she would be playing soccer within a week, which was amazing considering she had never played soccer a day in her life before. He promised her a beautiful new smile within 6 months to a year. He promised her that she would be almost back to normal. Jess was told that if she didn’t deliver her baby early and have these surgeries immediately she would soon die. Over two years later Jess is left with a lot of unfulfilled promises and unanswered questions. Jessica’s doctor left the country. There was no plan in place for switching her care and the hospital in Miami provided little help in the matter.

In May of 2021, Jessica and Matt were married. Jess was now eligible to be on her new husband’s health insurance and was no longer at the mercy of state insurance. Suddenly, the care that was once kept from her was now available. It took much advocacy but eventually, in February of 2022, Jess was seen by doctors at a cancer center in Tampa, a mere 40 minutes away, as opposed to traveling the 5 plus hours to Miami every few weeks. There her new medical team had to piece together her medical history to come up with a new plan, as Miami would not return phone calls. One of the new doctors believes that Jess may have actually had a different type of tumor called a chondrosarcoma. Which if true would mean that Jess’ prognosis would have been very different. Jess may not have had to have her baby prematurely or a mandibulectomy. Lawyers were contacted and the story was conveyed, unfortunately in the state of Florida she was out of time to file a medical lawsuit, especially one that would be almost impossible to win.

Fast forward to June of 2022, baby Ella is now a happy, healthy toddler and Jessica still has a sizable opening in the roof of her mouth along with her missing upper set of teeth. Two years of liquids and the occasional soft food treat. Two years of waiting for answers. Two years of limited mobility due to her leg deformity, which continuously swells and causes her pain. However, there is hope. Doctors have plans in place. They won't be easy or pain free. They will once again involve more grafts and more recovery, but this time with proper care and support. On June 20th, Jess will begin what is hoped to be the last major stage of her treatment. She will be on a feeding tube from anywhere between 2-4 weeks, which will hopefully give her mouth a chance to rest and fully heal. From there, the plan would be to begin the process of dental implants and this is where you come in.

Did you know that if you have breast cancer and require a mastectomy, insurance will cover the cost of breast reconstruction? Did you also know that if you lose your teeth to cancer, insurance will not cover the cost of dental implants? Dental implants cost around $30,000 out of pocket. Hospital bills are also beginning to pile up so any money collected over $30,000 would be put towards other medical expenses. Would you consider helping to off-set this financial burden?

This isn’t Jess’ first rodeo. When she was 16, Jess required a jaw reconstruction surgery. This involved surgically breaking and moving her lower jaw, metal screws and plates, a hospital stay and 6 weeks of her jaws wired together. Then as an adult Jess was involved in two car accidents within a year of each other. Both accidents caused significant whiplash, ultimately requiring surgery and more metal plates and screws. She is a survivor of much mental and physical trauma. Her neurological pain is deep and even if the surgery to close the hole and provide teeth are a success the mental and physical scars and pain will be long lasting. However, teeth will certainly improve her quality of life. Jess is so ready to bite into a juicy cheeseburger.

Thank you for taking the time to read this lengthy but not completely thorough account. Sarcomas can come back and can metastasize in major organs such as the lungs. Jess will continue to go through scans and be monitored. If you can and feel compelled to contribute financially we sincerely thank you. We are grateful for your prayers and would appreciate your shares of this story to help relieve this hefty burden.