Grieving the loss of opportunities has been such a difficult trauma for Grant and for all of us who love him!!!!

Grant Anderson Rediscovering Life At 16

First post: Jul 9, 2020 Latest post: Apr 9, 2021
When I started this page Grant Theodore was our 15 year old son... now he is 16. When he was 8 years old we began to notice systems during what seemed to be a virus that lasted 2 weeks long, and every basic test yielded no results. We were just as worried and frustrated and stumped as the doctor to have to call it an “unknown virus”. When he was 11 years old, those symptoms worsened to the point that we had to “home school” Grant while we traveled to every specialist that our incredible Pediatrician got us in to see. She worked so hard to figure out Grant’s suffering just as much as we were working. I can tell stories later, but eventually we discovered he had an Arachnoid Cyst in the Cavum Septum Pellucidum area of his brain. While the majority of these non-closures develop as a result of a congenital anomaly at birth, It should be noted that the reason for development of the cyst in that area is not completely known or agreed upon in the medical community. The anomaly itself can cause a cyst to form in certain individuals. This anomaly is due to an area in every infant brain that is meant to close shortly after birth. This area closes in around 80% of infants. In those infants without the closure, It can sometimes cause a disruption of Cerebral Spinal Fluid that normally passes through the ventricles of the brain. In the cases where patients develop this cyst, it can then be classified as symptomatic or asymptomatic. It is currently thought that the majority of these cysts are not symptomatic, (asymptomatic). Grant, Ted and I always explained, (if not insisted), that he had symptoms and those that knew of his condition and had been checking in on him, as well as some of our closest family and friends who have been in our lives and knew him and loved him- saw the symptoms as well. Every time we left a specialist that year, our then 12 year old son had to be held because he felt no one would ever make him feel better. We were told to wait and see of his cyst changed or grew each year. This was devastating because he has spent age 11 to 15 with symptoms that I will explain in my notes. Thanks to medical advancements and our incredibly brave son, Grant, decided he wanted the neurosurgeon to take the cyst out. I had promised him in the beginning of his struggles that we would find the answers and a treatment to let him live a life that someone his age should get to live. So- I kept my promise, (which I believe every parent would do my place with what I knew and what I had seen)! I didn’t even stop even when it seemed I wasn’t finding any answers. In 2019, I came across cases that had not been available previously. These incredibly similar cases had actually been mostly published in the years since Grant first saw the Specialists! I was shocked to see cases where children and adults experienced what we were experiencing and had success with a specific type of surgery. What was more encouraging was that there were reports supporting mostly positive outcomes post-op and at follow up exams for up to 5 years post op! Apparently that caused a pattern of old cases to be suddenly posted from patients enduring this unknown condition from over 20 years ago! I’m glad I never stopped researching. I even continued after Grant told me early in 2020 that he wasn’t getting to live his life anyway due to worsening symptoms, so he wanted to know that he had at least tried to find a way to feel better. I informed our Pediatrician who made an appointment with Grant’s Neurosurgeon, and soon after: Grant was scheduled for a “Stealth Guided (MRI) right frontal endoscopic fenestration of the Cavuum (CSP)” at 6am on Thursday, July 9th, 2020, (or tomorrow as I am writing this). I have never studied and researched every single aspect of a surgery more than this one. I am definitely terrified that the surgery would need to be altered at some point. I don’t have anyway to do my research there at that hospital. And “trust”, well in situations like these and especially with people I love, isn’t something I am able or willing to give most people. 1 parent can accompany him due to COVID-19. I cannot imagine not being the one with him. This has been a journey for many years and it will be a journey after his surgery. I don’t know if it could change his personality or cause potential side effects. I somehow know that his recovery journey will be longer than expected because of already preexisting diagnosis’s. He has ADHD and has been medicated for it since he was 6 years old. Most individuals with ADHD (ADD doesn’t actually appear in the DSM anymore), struggle with co-morbidities if they are living with ADHD. I also have the diagnosis and received it officially after he was diagnosed because females tend to have less obvious signs and symptoms. Women tend to be diagnosed right around the time that their child is diagnosed. The unfortunate thing is that individuals who live with the affect that that ADHD has on their lives tend to get anxiety disorders and depression. There are other associated conditions and characteristics common to this diagnosis, for example, Grant has been presenting with a Tic Disorder, and it could be caused by his brain condition or it could be that he was simply genetically predisposed to get it. I am very desperate to find out if it stays or if it is eliminated by this surgery. I am curious at how the surgery will affect his ADHD, anxiety and depression. Will his medication work the same anymore. Will we have to adjust it? Will he not need it anymore at all? I am overwhelmed with so many possibilities. And that made me realize that I should think about all the other people who may have these overwhelming thoughts or concerns or worries back home! I
feel that will be less overwhelming to our family here at home, if I created a page for those who want to check in and ask questions, send Grant love, and to remember to pray for this incredible gift that Grant has always been. I feel optimistic and so does Grant. Even some improvement is a win! Complete improvement is possible but even 50% improvement vs. doing nothing is a chance for Grant to feel what life is like without his constant symptoms! I haven’t really wanted to share this journey with those who cannot respect the incredible bravery, and those moments Grant is suffering yet still able to make us all laugh. He’s brilliant in so many ways. So I will post this link on social media. This way, you are not forced to sign in and follow this journey. (But, as I told our eternally optimistic Grant when he was in Pre-school, and all through Grade school: to kindly say the following when someone didn’t want to play with him), “Your loss, I’m A LOT of fun!” (I also said to never let them steal his dimples and walk away smiling!) And the best part about him ever saying it was that you could tell he was still happy and just moved on with excitement for another adventure❤️
So, we welcome you to our CaringBridge website. To reiterate, we are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
We, (My husband, Ted, I), want to be able to share all the information we can for our family and friends along with both our youngest son, (Jake) and his friends and Grant’s friends.
Love to you all and Blessings through what what we know is already such a hard time for everyone.

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