Dear friends and family,
On October 16th, 2021 Olivia will once again be participating in the Virtual Walk to End Lupus Now. These yearly fundraiser walks are so important to us because not only do the funds raised help with research towards finding a cure, providing financial assistance to Lupus patients in need, they also raise awareness towards a disease that so few people truly understand.
I had hoped that Olivia would be able to write this fundraiser letter herself, but as those close to us know, she has had an extremely difficult year trying to get out of her most recent flare and is just fed up of thinking about Lupus. I can't say that I blame her. She has however agreed to let me share some of the personal struggles she has faced this year, and is still struggling with at this time.
When Covid lockdowns began in March 2020, we took them very seriously as we understood how dangerous contracting Covid could be for Olivia. Her immune system on a good day (no flare), is very weak due to the disease itself as well as the medications she takes to suppress it. For those who don't know, Lupus is when the immune system is confused and attacks healthy organs in the body, therefor, medications to suppress the immune system are always necessary to stop it from attacking the good but then it also has difficulty fighting the bad. During those first few months of quarantining, Olivia was being weaned off of one of her main immune suppressant medications. The hope was that after 2 years flare free, that maybe her body could handle it as it is not something you want to be on for life. She had labs done every 4 weeks to make sure everything was stable and we were very hopeful that it was as the labs always looked great. Then in August 2020, without any symptoms or warning, she suffered a seizure at home. She doesn't remember the ambulance ride to the hospital because she never fully came out of the seizure until she was administered Ativan in the ER. Even then, it took her several hours to regain her ability to speak again. She later told me how terrified she was because although, she couldn't speak, she was aware of almost everything going on around her. She spent 5 days in the hospital and had many tests performed in order to figure out what was happening. MRI, CT, EEG, many blood draws and a spinal tap to rule out infection in the brain. I learned something new that day. When Lupus attacks the brain, there is no way to know it until you actually have a seizure. It does not show up in the blood stream so we had no way of knowing. She had multiple spots of swelling on her brain and one area which controlled speech which was why she was unable to speak for the few hours. Since that time, almost a full year now, she has been on several different treatment plans including chemotherapy and high dose steroids to clear the swelling and put her back into remission. Unfortunately, the swelling did briefly go away but now it is back and the Dr's are being much more aggressive in their treatments. This current treatment is a mix of a drug called Rituximab, Cytoxan and IV steroids weekly. It is sometimes difficult to remain hopeful in getting her back into remission and we pray every day that she can at some point have a normal teenage life. We have no choice but to be hopeful though because we will never stop fighting and will never allow her to give up either. A cure must be found or at least a treatment that doesn't make you sicker than the disease itself.
Five years ago, when Olivia was newly diagnosed, I once had a very ignorant comment made to me by someone I once knew. They had inquired on how Olivia was doing and when I responded with how difficult it was for her they responded with “ I'm actually happy that all she has is Lupus! It could have been much worse!” That comment has stuck with me all of these years. At first I was angry and hurt that someone could minimize the suffering that my child and millions of other Lupus patients go through but now I realize that it was not said to hurt, it was said out of lack of understanding of what this disease can do.
Please share, please spread awareness and please donate if you are able.
Thank you for caring enough to even read it.