Kim’s Fight Against a Rare and Serious Condition

We wanted to give you an update on Mum and also set up a way for those who have asked to help. She has been going through a really complicated and rare health situation over the past few months. This is her third hospital admission in two months, and things have been changing rapidly. Her condition is unusual and complex, which has made diagnosis and treatment especially challenging.

Mum has been dealing with worsening ear and facial pain, hearing loss, and now a droop on the left side of her face, which is now moving to the right side. She was originally diagnosed with a rare condition called fibrosing inflammatory pseudotumor, which affects the nasopharynx and skull base. More recently, imaging has shown enlarging fluid collections and swelling in the area. She has been on steroids and had a rituximab infusion, but her symptoms have continued to progress. Tomorrow, she has a biopsy scheduled to get more answers.

Mum has recently been started on three antibiotics, but infectious disease doctors have now asked to stop them in preparation for the biopsy. They explained that it is more helpful to pause the antibiotics right now because it will give the biopsy the best chance to show what is really going on, especially since her symptoms have continued to worsen despite the steroids and rituximab infusion. The team is also taking into account other possible factors, like the fact that Mum lives on a farm with chickens, cats, and dogs, and they are running tests for less common infections that can come from animals.

This situation has been incredibly stressful and unpredictable. While Mum focuses on her health, her medical bills and everyday expenses are adding up. Mum has had to be out of work while hospitalized and recovering. She has spent her life caring for others as a hospice home health aide and misses her patients deeply. We are asking for help to cover costs while she is hospitalized, including treatments, medications, and other necessary care. Any support, big or small, would mean so much to our family and help us make sure Mum can focus fully on getting better.

We are so grateful for any help, thoughts, and prayers. Thank you for standing with Mum and our family during this time.

With gratitude and love,

Aubrey and Tamara