Lexy's Fight

As most know our girl Lexy has been fighting for her life for now 8 whole years. While God granted us all of that time to love on Lexy and support her, her journey has been difficult. From being a healthy thriving young lady, to be paralyzed from her waist down, to doing rounds of chemo and now suffering horrific seizures leading to memory loss and a big trip to Mayo for additional testing and likely another big surgery, things have gotten really hard for Lexy and her family. I’m starting this GoFundMe in hopes all that often ask me or check in on the status of our girl, supported and sent love and prayers can re rally and support and lift her up again as the fight for her life continues. I will share her updates as we can but here is her first. 

From Lex 

“I’d like to start out by saying hello, sending my love to everyone, and give a long overdue update Since my last update about 5 years ago scans have shown slight growth at the lower end of the tumor but has since remained stable with no new growth for over a year. There are multiple cysts that have appeared since my last scan that are compressing on my nerve roots just below my tumor which have caused more issues with weight baring, foot drop, proprioception, issues with my bladder, and overall sensory issues. I still have my compression fracture at T11-T12 that has caused some deformity but I do have amazing upper body strength! All we can do is continue to pray that the tumor doesn’t grow anymore and keep moving forward. On to the next one. For those that do not know, almost 6 years ago I had my first seizure. At one point I went a full year with no seizures but then they began happening more often and closer and closer together. The one consistent thing with them is they are always in the morning and I usually get sick right before. To this day we do not know why I am having the seizures. The last year 3 years have been the most difficult for me mentally, physically, emotionally… just everything. I stopped updating when the seizures became too much. I felt and still feel embarrassed that I have them and are even in this whole situation at all. I know I have no control over it but it’s just hard to take in sometimes. A fact I learned through all of this is that over 40% of people that have seizures don’t know why they are having them. This statistic is defeating and heartbreaking especially for those who suffer from them. The seizures have definitely started to take their toll on me. I have difficulty remembering things. I have both short term and long term memory loss. I write pretty much everything down which is very helpful. My family, friends, and doctors are great at helping me remember things. I’m not able to retain as much information as I used to. I also struggle with relaying and communicating information sometimes. Not only have the seizures started to take a toll on me mentally but they have also impacted me physically and emotionally. I had to stop working. I had to stop driving. I started isolating myself to the point I wasn’t leaving my house unless it was for a doctor’s appointment. I feel like I have completely lost my independence and I absolutely hate it. I would do absolutely anything to be able to just get in my car and drive and just listen to music. We got cameras in the house so my family can have access to check in on me to make sure I’m not having a seizure which has saved me many times before. My Dad, my sister Ashley, and even my dogs have saved my life multiple times while I was having a seizure. I truly do believe someone is watching over me above. Things are just different. I don’t feel like the girl that used to be so fearless. The girl that lived. That girl that just enjoyed everyone’s company.. even her own. The girl who genuinely enjoyed life. Never in my life have I felt this low in my whole journey. To put it simply I have been struggling with extreme depression and anxiety and I am just starting to pull myself out of that place We had a good run for a few months and then I had a seizure and it was just another setback. That’s been the typical trend for a while now; few good months, seizure, set back. But as always, we rally and boot and continue moving forward with the same goals in mind— working on regaining my independence, getting answers, and so much more We have gone to 4 different neurologists and haven’t gotten any new answers. We are simply just “getting by.” I am maxed out on all of my seizure medications (which I absolutely hate having to take) basically meaning we are out of options. Beginning of June we are headed to the Mayo Clinic to meet with an epileptic specialist. I’ll be admitted inpatient for a 10-14 day study to see if I am eligible for an implant in my brain called the NeuroPace RNS system. The goal of the implant is to send shock waves to the area of the brain that is having the seizure activity in hopes to stop the seizure before it begins. I’m overwhelmed with many emotions at the thought of having brain surgery after my failed life changing spine surgery 8 years ago. BUT without it my quality of life will only continue to decrease. It’s too much trauma for me, my family, and my friends every time we have to live through this horrendous reality of seizures. Even through all of this.. I do feel like that “Lex” is coming back around. I just feel like she might be a little different coming from such a dark place. My family and friends have stood by my side and helped me and I wouldn’t be able to do this without them. I would also like to give a huge shout out to the team at Meridian Fire Station 91 ❤️ On top of all of this trauma.. add in the financial hardship and lack of QUALITY and AFFORDABLE health insurance and you’ve really got yourself a heck of a mix. We have been having extreme financial difficulties for over 2 years for a number of reasons. First, all the medical debt I have accumulated over this time and all of my other bills to come. Additionally, because I am unemployed and the system genuinely doesn’t care consistent income is nearly nonexistent. With that being said, my father has taken on the financial responsibility of making sure all of my needs are met. That doesn’t come easy though. At the end of the day all we can do is pray. Pray for positive changes and answers. Pray for medical advancement when it comes to coverage for medically necessary equipment and medications for anyone who suffers or is struggling. Pray and be thankful for every breath we take. Be thankful for every moment with your family and the ones you love. Embrace it ❤️ Love you all ❤️ I miss you all so much Thank you for supporting me through all of this and thank you for listening to me -Lex