Special Needs Spotlight || Owen

Miggy: Welcome Emily, I’m so happy to be featuring you and your son Owen today. Let’s start at the beginning, when did you first start to notice signs and symptoms that something wasn’t right with Owen. How long did it take you to get a diagnosis and do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Emily: Owen was a perfectly healthy, happy baby born full term after 30 hours (YIKES) of labor. He hit all his milestones, some even early. Right after Owen turned one, I thought- yay I can finally rest easier knowing we don’t have to worry about SIDS and other scary newborn things! But that all changed May 2015 when Owen was just 13 months old. I was working and received a frantic phone call from his daycare teacher. She said “something is wrong with Owen, you have to get here NOW!” She was crying. I was shocked. I work at a children’s hospital where they have onsite daycare. I ran down 4 flights of stairs and hit the front doors. From the front of my building, I can see Owen’s daycare building. It was surrounded with security and people running in. My first thought was that someone had taken him or he had gotten severely hurt by some freak accident. I ran so fast I lost my shoes. I was in a tunnel- I could see nothing but the front door of his school. I could hear no sounds. When I got there he was having a full blown tonic clonic seizure (Grand Mal) but at the time, I had no clue what that looked like. I just began screaming “someone help my baby, someone help” and I’m certain a few other choice words. They were waiting on the ambulance but the ER was just one street over since we were on the hospital’s campus. The director of the daycare finally just grabbed Owen and raced to the ER. The entire thing lasted about 7 minutes but to me it seemed like forever. They called it a febrile seizure and we were sent home.

Then the second one happened, then the third, and then the EEGs and Neurology appointments. I was told some kids just have seizures but deep down in my mommy gut, I knew it was something more. So I pushed and pushed and got an MRI scheduled. Then he had a seizure while we were on our family vacation. This was July 2015. I pushed and got the MRI moved up. Then the Saturday before his scheduled MRI, he had another seizure. We went by ambulance to our hospital. This was the day our entire world stopped spinning. As he was seizing, a Neurology resident just so happened to be in the ER. When he saw Owen’s seizure- he ordered a CT immediately. I remember thinking okay finally someone is listening. As we went into the CT scan room and he went into the tube… everything went silent. I looked to the workers and nurses behind the glass looking at the images. They tried their best to have a poker face but I knew what it was. I knew from day one.

We were ushered back to the ER trauma room. The next thing I knew the room was filled with doctors and Pastoral care. The only thing I heard was “there appears to be a large mass on your son’s brain”… from there it was just a whirlwind of people, sounds, and planning. I don’t think I spoke for over an hour. I just nodded my head and tried to breathe…He had an 8 hour brain surgery 3 days later and a month after that a VP shunt was placed to help with the hydrocephalus. They were only able to remove about 10% of the tumor (just enough to biopsy). His tumor is golf ball sized and attached to his thalamus (which I’ve come to learn makes removal impossible). He was diagnosed with a benign ganglioglioma. Fast forward to over a year later- we are happy to report his tumor is still stable. He is the happiest, sassiest, most beautiful human we’ve ever known. We are so happy to have him with us and it has taught us to always live in the moment. I’ve gone through all the stages of grief with it. I’ve been angry, I’ve been depressed, I’ve questioned everything, I’ve mourned the life I pictured for him in my head, and now I’ve decided to be positive and have faith no matter what.

Miggy: Can you please educate us on Owen’s condition, his symptoms and how his needs affect your day-to-day life?

Emily: Owen’s tumor is super rare. Gangliogliomas only make up about 1% of all brain tumors. If they can be safely removed, they typically don’t grow back. Owen’s is even more rare due to its characteristics and location. We’ve sent his records to St. Jude’s and Boston Children’s Hospital… no one believes they can safely remove his tumor. He is currently in physical therapy and occupational therapy. He has some issues with weakness on his left side and some fine motor skill issues. He is progressing every day. We recently enrolled him a developmental daycare/preschool which he LOVES. They have been amazing in his success and journey. He is super feisty and will not let anything stop him from getting what he wants. Surprisingly his speech is advanced and he LOVES TO TALK (he gets it honestly). The worst symptom are the seizures. This year, along with the huge tonic clonic seizures, he started having partial seizures (sometimes called absent or petit mal). Every single seizure takes a huge toll on his body and sets him back in his therapies. He has tried a lot of anti-seizure meds but none seem to stop them. They also come with terrible horrible no good side effects (for Owen). His last big seizure was in September and it lasted over 4 hours. He ended up having the be temporarily paralyzed and sedated and intubated to get it to stop. That landed us in PICU yet again (we are frequent flyers there). I’ve recently started a venture on to other options which I will discuss further in a later question.

Miggy: What are the biggest worries you face for Owen? On the flip side, what are your hopes and dreams for him?

Emily: My biggest worry for Owen is being independent. Currently he has to sleep with us because we have no safe way to detect seizures. I worry he will never be able to drive or live alone. This wouldn’t worry so much but he longs to be independent already at 2 and half years old. I worry about the fact that mentally he is typically developing but that his seizures will make it hard to “mainstream” him into school. I also worry daily about his seizures. The fears keep my husband and I up at night. I always worry one will do some permanent damage and we will lose the Owen we know and love (that he won’t return to his “baseline”) My hopes and dreams for Owen are to live a life that is full. One that he isn’t doped up on pharmaceuticals every day. We have started using the phrase “quality over quantity”. My hope is that he will grow old but if he doesn’t get the chance that his time here is absolutely amazing.

Miggy: One thing you mentioned in your email was your fight to get cannabis oil–or medical marijuana–legalized in your state and it finally is–yay! Tell us a little about this treatment–why it’s so important specifically for people with epilepsy. And also lets dispel some of the myths surrounding cannabis oil as well! What can people do to help make this treatment more available for people like your son Owen?

Emily: Touchy subject for me, but after Owen’s last seizure that left him in PICU for almost a week… I decided to further my research on CBD oil. To be clear, CBD oil in certain varieties can already be legally purchased online in all 50 states (unless your state made a law banning it) due to the Farm Bill that passed in 2014. It is considered “hemp oil” if it has less than 0.3% thc on a dry weight basis. Through various online sources I had read about many parents of “seizure kids” turning to CBD and having great results. Dr. Sanja Gupta even did some documentaries on CNN about it (titled: Weed). So after a lot of research, I ordered CBD oil through CW Hemp. It is a strain called Charlotte’s Web after a little girl named Charlotte Figi (it is a fascinating story). I became a member of a non-for-profit group called Realm of Caring (started by Charlotte’s mother). They help parents like me determine dosage, offer support, and answer questions. I was flying blind but felt I had to do something. After watching Owen be pumped full of so many medications, I had hit a turning point. He was already on 3 anti-seizure meds at their maximum doses. I began to worry about long term side effects and his liver. I began giving him the CBD oil daily and slowly weaned down his medications. I started getting daily reports of how happy and alert he was from daycare. That he wasn’t having any spasticity in his muscles and he was able to do more fine motor tasks than ever before.The day after Thanksgiving though, he started to have another tonic clonic seizure.I had been skeptical about of the CBD but in that moment I decided to give it a try. I administered his 5mg of rectal Diastat (the “rescue” medication that have never worked) and then I put 1ml of the oil under his tongue. IT STOPPED HIS SEIZURE. This had NEVER EVER happened before. While we can get what he needs online, it costs us about $250/month and sometimes (just like with FDA approved pharmaceuticals) dosage needs to be adjusted or changed. Right now we can only get the “one size fits all” dietary CBD oil online. To have a dispensary here in Arkansas means I will have access to higher purity oil and it would be prescription. By it becoming legal here I have now been able to speak to his current team of doctors about dosage, outcomes, side effects, etc. That is why I fought for the issue to pass even though I see both sides (for and against cannabis)- I’ve seen what it can do first hand.

I’ve been called a lot of very hurtful, ugly things in my quest to educate people on the medical benefits of cannabis oil but at the end of the day, Owen and kids like him are my passion. I will always be their loudest voice. Just by talking about it and being open-minded people can begin to start dialogues and further the research on something that could be life changing for so many. My goal is to help stop the stigma but until the Federal government de-schedules marijuana it will continue to be an issue for research funding and negative opinions. I just encourage people to do the research for themselves. NIH.gov is a good place to start. We aren’t just a bunch of hippies trying to get our kids high- we are trying to save their lives. Even by writing this, I face ridicule. I could go on forever about this topic but I will end by saying for some kids it might not work but it is so far for Owen and it has been life changing. We decided to take a chance and follow our hearts. If you had told me 3 years ago I’d be fighting to give my two and half year old a cannabis extract, I’d think you were crazy. So I’ll end this by saying- “You may not be the parent of a child with a brain tumor. Awareness might not be a priority. The day before my child was diagnosed, I wasn’t a brain tumor mom either…”

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Emily: There are so many. We learned that humor is the best medicine. My favorite thing is when I hear other moms talking about parenting advice or worry about trivial things. I don’t try to discredit their struggles but I often say things like “Well I breastfed for 14 months and fed him all organic and he still ended up with a brain tumor so I wouldn’t worry so much about it…” or “Well, don’t take advice from me- my kid ended up with a brain tumor…” people often look at my horrified. I just have a phobia of the “pity” look I get when people find out Owen has a tumor. He looks “normal” (I hate that word) so we deal a lot with the invisible illness issues. Like when he is acting out something terrible because a new med he is trying is making him feel bad, people look at him like he is just spoiled. I just look people right in the eyes and say, “He’s on drugs. Sorry.” HA.

Miggy: How can people best approach or respond to Owen? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Emily: Owen will most likely approach you first. He loves people and talking. I wish people knew that just because Owen’s tumor isn’t cancer that doesn’t mean it is any less serious and that it could turn cancerous at any time. I also cannot stand when people ask “oh have you sent his records to so and so or my so and so did this and it worked”. I promise I’ve researched it all and then some. I know people are trying to be helpful but it drives me bonkers.

Miggy: What is the biggest lesson you’ve learned since becoming Owen’s mom?

Emily: Life never goes as planned and that is okay. My favorite quote is “play the hand you were dealt like it is the hand you wanted.” My biggest lesson would be to SPEAK UP. Doctors are amazing and wonderful but they are not God and no one knows your child like you do. Do not be afraid to question them or push back if you think something isn’t right. You are your child’s biggest advocate.

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