Help Sarah Howsare fight brain tumor
Donation protected
Sept 2018, Sarah, 22 years old was diagnosed with a brainstem tumor. The past year has been a rollercoaster of emotions. Please take a moment to read her story. Upon initial diagnosis we were told this tumor appeared to be a stage II or III cancerous inoperable brainstem glioma and that Sarah had 2 to 3 years to live. Devastated we began to look for someone to help us. We fought with insurance and went to Moffitt Cancer Center.
November Sarah took a turn for the worse, seizure like episodes leaving her weak, and at times unable to walk, using a walker and wheelchair. Vomiting, nausea, headaches, numbness in extremities. Her condition caused her to be out of work as a patient care tech at a hospital. Sarah was very upset, missing her patients, friends and coworkers. We as a family decided our only option was to proceed with a biopsy despite the risks we needed to know what exactly we are dealing with and how to treat this monster. BTW.Sarah has a great sense of humor....the tumor has a name, Toby, if you have ever watched the show The Office, Toby is a character no one likes . The biopsy is very risky being deep in her brainstem so we decide to make the holidays the best we can and biopsy after first of the year. Feb 5th was biopsy day, terrifying as it was, we were given the news.. this is a piolystic astrocytoma benign cancer, if your going to have a brain tumor this is supposedly the best to have, not reassuring to the person with it though. There is a curve ball though.. it has the Braf V600e mutation, meaning this mutation promotes cell growth potentially one day causing the tumor to be more aggressive. Next step 6 weeks of daily radiation, while seizures since Feb 6th have been non existent, the other symptoms are just as bad, toward the end of radiation she developed tremors in her hands and feet. Lots of meds, struggling Sarah gets thru it. May 19th last day of radiation!!! Sarah decided to go back to work the following week, 3 twelve hour days a week, her manager let her work at the desk, she was sad because she wants nothing more than to take care of her patients but knowing how weak she is and the tremors will not allow her to.. but at the same time happy just to be there. 4 weeks in headaches have improved thanks to a medication called emagalty! While she is symptomatic, she talks to her manager about 1 day a week going back on the floor, very exciting. Unfortunately June 26th before this could happen Sarah had a seizure and and back in the hospital. Tumor is stable, radiation didn't work as expected. The symptoms are still overpowering her life. Sarah is now out of work.. we see a level 4 seizure specialist in Sept. We need answers to what is causing the seizures, what can help give her improved quality of life. We have found a THC nosespray that stops the seizures within seconds of them starting. The medications she is on make her sleep a good 14 hours a day. Shes exhausted and weak from the littlest activities. Still has 2 to 3 seizures a day...some days are more depending on activity.
This has been only a snapshot of the past year. Lots of doctors visits, prescriptions, physical therapy, over the counter medications like the nose spray, she has exhausted her FMLA and short term disability. We now are having to file long term disability with the state, which is a lengthy process so we are finding out. Insurance has covered some but not all. She has no income right now and expenses are continuing to pile up, as we see additional specialist out of pocket and medications that are working are expensive and not covered. If you can help it is greatly appreciated, if you cant , can you please share her story. #sarahstrong #positivevibes #positiveprayers #braintumorawareness
November Sarah took a turn for the worse, seizure like episodes leaving her weak, and at times unable to walk, using a walker and wheelchair. Vomiting, nausea, headaches, numbness in extremities. Her condition caused her to be out of work as a patient care tech at a hospital. Sarah was very upset, missing her patients, friends and coworkers. We as a family decided our only option was to proceed with a biopsy despite the risks we needed to know what exactly we are dealing with and how to treat this monster. BTW.Sarah has a great sense of humor....the tumor has a name, Toby, if you have ever watched the show The Office, Toby is a character no one likes . The biopsy is very risky being deep in her brainstem so we decide to make the holidays the best we can and biopsy after first of the year. Feb 5th was biopsy day, terrifying as it was, we were given the news.. this is a piolystic astrocytoma benign cancer, if your going to have a brain tumor this is supposedly the best to have, not reassuring to the person with it though. There is a curve ball though.. it has the Braf V600e mutation, meaning this mutation promotes cell growth potentially one day causing the tumor to be more aggressive. Next step 6 weeks of daily radiation, while seizures since Feb 6th have been non existent, the other symptoms are just as bad, toward the end of radiation she developed tremors in her hands and feet. Lots of meds, struggling Sarah gets thru it. May 19th last day of radiation!!! Sarah decided to go back to work the following week, 3 twelve hour days a week, her manager let her work at the desk, she was sad because she wants nothing more than to take care of her patients but knowing how weak she is and the tremors will not allow her to.. but at the same time happy just to be there. 4 weeks in headaches have improved thanks to a medication called emagalty! While she is symptomatic, she talks to her manager about 1 day a week going back on the floor, very exciting. Unfortunately June 26th before this could happen Sarah had a seizure and and back in the hospital. Tumor is stable, radiation didn't work as expected. The symptoms are still overpowering her life. Sarah is now out of work.. we see a level 4 seizure specialist in Sept. We need answers to what is causing the seizures, what can help give her improved quality of life. We have found a THC nosespray that stops the seizures within seconds of them starting. The medications she is on make her sleep a good 14 hours a day. Shes exhausted and weak from the littlest activities. Still has 2 to 3 seizures a day...some days are more depending on activity.
This has been only a snapshot of the past year. Lots of doctors visits, prescriptions, physical therapy, over the counter medications like the nose spray, she has exhausted her FMLA and short term disability. We now are having to file long term disability with the state, which is a lengthy process so we are finding out. Insurance has covered some but not all. She has no income right now and expenses are continuing to pile up, as we see additional specialist out of pocket and medications that are working are expensive and not covered. If you can help it is greatly appreciated, if you cant , can you please share her story. #sarahstrong #positivevibes #positiveprayers #braintumorawareness
Organizer
Sylvvia Cyrwus
Organizer
Clearwater, FL
