On December 18, 2022 I woke my husband up to me having a seizure in the middle of the night. I was taken to the local hospital by ambulance where they performed a CT scan. This revealed something on the left side of my brain. I was then transferred to a larger hospital an hour away where an MRI was done. This revealed a large mass in the left side of my brain. I was sent home and told to enjoy the holidays as this may very likely be the last time. I was 31 years old with two young children (4 year old and 1 year old) so this was very difficult to hear.
That next day I started reaching out to other neurologists and was lucky enough to get into Dana Farber in Boston as well as Brigham and Women’s Hospital where I had an amazing surgeon. I had surgery on January 3rd and they were able to get about 95% of my mass removed. My histopathology report came back as Astrocytoma, IDH Mutant W.H.O grade 4. So with that I had to start an aggressive radiation and chemotherapy treatment. I had radiation for 30 days and chemotherapy for 42 days in a row, I then was given a 1 month break from treatments and then started my Chemotherapy back up for 12 months, taking my chemo for 7 days then 21 days off each month. After that I was given another month off before starting an IDH blocking medication which I take daily. I am still here and I am still fighting!
My life changed drastically at first. As a mother to two young boys I was no longer able to drive them to school or daycare. I was unable to work, which is something that I loved doing. After my surgery things were even more complicated. My surgery was an all day event, but my surgeon was amazing and I was up and walking a few hours after my surgery and sent home two days later. Once home things were a bit more difficult. I was unable to pick up my kids or hold them, which I badly wanted to be able to do. I wasn’t able to care for my horses or other animals so that required hiring outside help. Thankfully my parents moved in to help my husband and I with kids and house tasks. As my husband was having to work more hours and do a lot more as I wasn’t able to drop kids off to school/daycare or pick them up. My energy levels were very low and got even worse during radiation and chemotherapy.
I thankfully have a wonderful group of people in my life. They cooked meals for us, cleaned my house and sat with me during those first few weeks after surgery. I am blessed to have a very close Church Family who loves my family and did all they could to help in many ways especially praying for my family and myself during the worst parts during surgery and treatments.
I am going Gray in May to help support all of those affected by Brain Tumors. It affects us all so differently but in such serious ways. The survival rates and prognosis associated with Brain Tumors is very grim and I want to see these numbers change!
The brain tumor experience is often something that has no symptoms until someone has a seizure. It is a very unexpected diagnosis that hits very hard. It is important to be aggressive in your fight and to surround yourself with a strong team!
God is good and if you allow him to lead you in your journey, He can change your entire experience. I always believed in God, but hadn’t been to church until I had my first MRI. After hearing I had a large brain mass the first thing I said to my husband was I need to go to Church and I need to be baptized. Since then I have never wanted to miss a day at church. God has stayed by my side through this entire journey. I have cried to him MANY times, but I have also celebrated with him. I know that he has been with me and with my medical team throughout all of this and I know he will never leave my side. I have given my testimony at my church as well as been interviewed a few times giving my testimony of how God has changed my life and is always giving me just what I need. Judges 6:23
