She had 3 jobs, working as a CNA, PCT and Personal Caregiver. While at the beach in early Sept her hands went numb. The following week she had an MRI , doctor was thinking pinched nerve due to lifting patients. Sarah had been struggling with severe headaches, nausea and vomiting the previous month, we thought she was over doing things with 3 jobs, living on her own. November 2018 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. 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 could and biopsy after first of the year. Feb 5th 2019 was biopsy day, terrifying as it was, we were given the news.. this is a Pilocystic Astrocytoma Grade 1, slow growing tumor with a 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, May 19th 2019 was last day of radiation!!! Sarah decided to go back to work the following week, Unfortunately June 26th 2019 Sarah had a seizure and and back in the hospital. Tumor is stable, The symptoms are still overpowering her life. Sarah is now out of work.. we see a level 4 seizure specialist in Sept. 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 2019.. Lots of doctors visits, hospitalizations, medications, physical therapy. May 2020, Sarah was still having non epileptic seizures, during a doctor visit at Moffitt Sarah had a seizure, ended up in the ER. The Neurologist and his PA found she was on Reglan for nausea. Evidently you should not be on Reglan for more than 12 weeks, as it can cause Tardive dyskinesia, tremors, seizures... she was left on it for 18 months! We also found out Sarahs adrenal glands stopped working and not producing Cortisol. She will have to take hydrocortisone steroid daily to deal with Adrenal Insufficiency (AI) can be life threatening if she goes into crisis.
2021, started out with ER visit for Covid. Hallucinations, vomiting, all the fun stuff. As the year went on Sarah was more active, not using the wheelchair and trying not to use the walker. The seizure activity decreased. Still symptomatic.. nausea, vomiting, balance issues, headaches, neuropathy in both ands and feet, tardive, tremors and seizures. MRI's, doctors visits and lots of medications. Bit with every medication comes a side effect. Applied for disability and denied 2 times.
2022, No change to the tumor, however still symptomatic , all the same from above but now Sarah has carpal tunnel in both hands. Severe nerve pain in her hands causing issues with day to day routine. Unfortunately the signals in her brain are not working right, all that can be done is adjust medications to try to decrease the pain. At the same time work on adjusting the hydrocortisone daily to help deal with the mental and physical stress to keep her from going into Adrenal crisis. Things are not expected to get better. With all of this she is not able to work. We will have to get a disability attorney involved and hope the 3rd time works. As frustrating and overwhelming things get, it always
