Remi's Travel Expenses and Wishes

Hi! I'm Hannah- Remi's mom. Remi was diagnosed with DIPG in August 2022. DIPG is a terminal brainstem glioma that, because of it's location is inoperable and usually has a life expectany of 9 to 12 months (if that). We are blessed as she is coming up on 15 months post diagnosis, but make no mistake- her life has drastically changed. She is immobile and almost completely non verbal. She can no longer smile. She has weakness in her right side and can no longer play or write. She requires an NG tube for nutrients. She is completely dependent in care. But know this- Remi fights every day to live another. She is my inspiration and my hero. My heart and soul. She is my determined girl and is still my perfect girl- trapped in a deteriorating body. Although her physical appearance has been altered- she remains completely mentally in tact. If you have the honor of knowing her- she is still her feisty self. She is literally the smartest 7 year old. Remi no longer qualifies for clinical trials, so we are doing our best to find something that may work for her at home. Her primary Oncologist is in Michigan and it requires us to travel frequently to appointments there and in other locations. We will always go where Remi can have the best medical treatment.

I want to give Remi the best life I can- as I do not know how much time we will get with her. Remi loves the mountains and the beach- and I plan on taking her as she is able to go. She deserves to see the world. She deserves to grow up. DIPG has documented cases dating back as far as the 1960s. Today- in 2023- we have only seen radiation work- and it only buys time. Remi has had 2 rounds of radiation- but became critically ill during her 2nd round due to a lung infection and low WBC. She was inpatient for 6 weeks this summer and spent several days in ICU on a ventilator. But she beat it. It shows she is a fighter.

Remi is aware of her diagnosis and her prognosis. She sits in during appointments and even has a say in her treatment plan. She is so wise beyond her years. She takes comfort in knowing that one day she will be reunited with her great Grandaddy, her memaw, and her kitties in Heaven. A reality that she handles much better than me.

Remi has a page on FB called Rally-4-Remi that I would encourage everyone to follow. I share her journey, along with other children's stories.

Thank you for reading about my sweet girl. If you aren't able to donate- no worries! Just keep us in your prayers for stability, longevity, and a cure.

Thanks so much, Hannah ❤️