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Hi everyone, I am fundraising for my older sister, Lilly Forsythe. First, these are some words from her:
“Since i was 6 years old until 12, I dealt with chronic lung infections. It was touch and go for me sometimes. My parents say I am so Blessed to have gotten through them. In 7th grade, starting at age 12, i was diagnosed with an auto immune thyroid disease, Hashimoto’s. I also learned I had idiopathic inflammatory disease which manifested into an orbital Orbital pseudo tumor, which acts as a brain tumor with a mass like swelling of tissue behind the eye in an area called the orbit. Severe cases like mine do not respond well to treatment and there may be some loss of vision. I have been to the Emergency room countless times for my conditions starting at age 6 up to this day and sometimes up to 2-4 hospital stays a year. I have become quite knowledgeable about my care and medical terminology. I even help the nurses at times. I have been to 4 different cities to see specialists to help me and had a biopsy done at a very well known facility in the country. Unfortunately the cells were crushed and the biopsy wasn’t able to be read. My biopsy caused a lot of stress to the orbital pseudo tumor and therefore I had to go on high doses of steroids for a couple of years due to the inflammation it caused. My original doctor, Dr. Ketiz from Children’s Hospital of Pittsburgh, was always willing to talk with my mother about my condition, even when i moved out of state and was being treated from another Children’s Hospital. I had a severe flare in 2020, where i lost my vision in my left eye for 5 days with chronic pain and wasnt sure if my vision would return. The Orbital Pseudo Tumor spread at this time past the orbit to the protective layer of the brain. Due to how rare my condition is, being only 17 there are not enough cases like mine to have studies done to know what will cure such a complicated case. Some Orbital Pseudo Tumors in older adults go away with steroid treatments. Mine is not one of those cases. Since my condition has progressed and being on aggressive treatments for years have cause complications to my health. This combination greatly impacts my daily life. I am immunocompromised from the aggressive oral and IV medication treatments I am on to try to keep the Orbital Pseudo Tumor stable and to cover other auto immune imbalances or diseases that could be going on in my body. Currently I am in the hospital with unknown condition. I got a severe infection that could have taken my life that a person could fight off easy. It was very unexpected, very painful, and happened within hours. The reason is because my body is not make Neutrophils at this time, somethings that the doctors and I were unaware of. You need Neutrophils, a type of B cell to be able to fight infections. I am not able to fight this infection on my own, so the doctors are treating me with medications to do the job for me until we can figure out why I don’t have any Neutrophils.”
“Since i was 6 years old until 12, I dealt with chronic lung infections. It was touch and go for me sometimes. My parents say I am so Blessed to have gotten through them. In 7th grade, starting at age 12, i was diagnosed with an auto immune thyroid disease, Hashimoto’s. I also learned I had idiopathic inflammatory disease which manifested into an orbital Orbital pseudo tumor, which acts as a brain tumor with a mass like swelling of tissue behind the eye in an area called the orbit. Severe cases like mine do not respond well to treatment and there may be some loss of vision. I have been to the Emergency room countless times for my conditions starting at age 6 up to this day and sometimes up to 2-4 hospital stays a year. I have become quite knowledgeable about my care and medical terminology. I even help the nurses at times. I have been to 4 different cities to see specialists to help me and had a biopsy done at a very well known facility in the country. Unfortunately the cells were crushed and the biopsy wasn’t able to be read. My biopsy caused a lot of stress to the orbital pseudo tumor and therefore I had to go on high doses of steroids for a couple of years due to the inflammation it caused. My original doctor, Dr. Ketiz from Children’s Hospital of Pittsburgh, was always willing to talk with my mother about my condition, even when i moved out of state and was being treated from another Children’s Hospital. I had a severe flare in 2020, where i lost my vision in my left eye for 5 days with chronic pain and wasnt sure if my vision would return. The Orbital Pseudo Tumor spread at this time past the orbit to the protective layer of the brain. Due to how rare my condition is, being only 17 there are not enough cases like mine to have studies done to know what will cure such a complicated case. Some Orbital Pseudo Tumors in older adults go away with steroid treatments. Mine is not one of those cases. Since my condition has progressed and being on aggressive treatments for years have cause complications to my health. This combination greatly impacts my daily life. I am immunocompromised from the aggressive oral and IV medication treatments I am on to try to keep the Orbital Pseudo Tumor stable and to cover other auto immune imbalances or diseases that could be going on in my body. Currently I am in the hospital with unknown condition. I got a severe infection that could have taken my life that a person could fight off easy. It was very unexpected, very painful, and happened within hours. The reason is because my body is not make Neutrophils at this time, somethings that the doctors and I were unaware of. You need Neutrophils, a type of B cell to be able to fight infections. I am not able to fight this infection on my own, so the doctors are treating me with medications to do the job for me until we can figure out why I don’t have any Neutrophils.”
2023 Update: Lilly has now been in the hospital twice in the span of days. She is in good hands being treated at Children’s Hospital in downtown Pittsburgh. Lilly has started to become blind in her left eye where the tumor is located. The doctors have decided it’s best to start her on radiation treatments everyday for a certain period of time. That’s all the information we have at the moment. Lilly has started college and is making a life for her self. Dealing with her tumor and managing school work as it is her first semester will not be easy. Our only hope is that she is able to stay in college and her professors will help her with her work, as she may not be able to attend physically in the classroom. All she wishes is to return to her dorm and live life normally. We ask you to send your love and prayers as Lilly will be starting these new treatments. All we have is hope for this beautiful girl to pull through. We push her everyday to keep fighting and we will never stop.
*Donations will support Lilly and her family with gas driving back and forth, food and anything Lilly or the family may need to help get her through this time while Lilly is in the hospital and during 3 weeks of Radiation Therapy. We are Grateful for your support prayer and positive thoughts for our family and Lilly during her continued journey for healing
All her life, Lilly has been through many physical and mental struggles. She continues to fight each day. Ever since covid became a world virus, due to hospital protocol, I am not able to go visit my sister until i’m 18. Which is very hard because I am not able to be by her side. I always make sure she comes home to a clean room with her plants watered. These treatments and medical care are very costly. I love Lilly so much. She is my best friend and the person I choose to look up too. I would do anything for her to get better as soon as possible. If you can, please make a donation to help Lilly heal.
