Eli Van Gorder

"Eli has been a Riley kid since shortly after birth when he was diagnosed with cochlear dysplasia, deaf in his right ear. He saw a Riley ENT a couple times a year and we always felt grateful on our visits that we were lucky in comparison to what some of the kids we would see there were dealing with. Then when Eli was 4, and had been to the doctor 3 times struggling with off and on headaches, nausea and extreme fatigue for 2 weeks, we insisted on a MRI. On October 24, 2013, Eli had a MRI at our local IU hospital. I remember that day so vividly that sometimes it seems like yesterday. I went back to work after the MRI and anxiously awaited a phone call. The call would forever change our lives, advising that our sweet little boy had a skittle size mass on his pineal gland and that we needed to head to Riley immediately. I fell to pieces calling Kev with news of the scary unknown. We packed a bag and headed to Riley. The neurosurgeon met us in the Riley ER to discuss the biopsy procedure and placing a shunt to reduce the fluid on his brain that had been causing the headaches, nausea and fatigue due to the mass. We then waited a week for the biopsy results. We met with the oncologist and received the devastating news that it was our worst fear, pineoblastoma, a Stage 4 brain tumor. It felt like a sledge hammer to our hearts Trying to stay strong and positive as we had to tell family and friends our sweet little boys diagnosis. Words no parent should ever hear or treatments a child should ever go through!

Then going into battle mode, researching, and throwing everything at it that we could from the conventional chemo and radiation to cannabis oils, organic juicing, essential oils, supplements, positive vibes and lots of LOVE! Eli endured multiple surgeries to place a shunt, a biopsy, a port, feeding tube, 6 months of chemo, being put under anesthesia every day for 33 days of proton radiation treatments to his brain and spine, blood transfusions, platelet transfusions, and numerous MRI’s. Eli finished his cancer treatments in July of 2014 and has been in remission ever since. He developed mobility issues after finishing his treatments due to scar tissue on his brain from the radiation so he uses his wheels to get around now. On a routine follow up MRI of his brain and spine in 2018, the radiologist saw what he thought was a vascular ring (a right aortic arch encircling his airway) and was referred to cardiology for an ECHO which confirmed the vascular ring. Eli had a thoracotomy in 2018 to repair the vascular ring. The cardiology team suggested we test him for a genetic condition known as 22q11.2 Deletion aka Di George Syndrome which commonly has congenital heart defects such as the vascular ring Eli had. Eli tested positive for the syndrome which comes with issues such as learning disabilities, short stature, hearing impairments, etc. Despite all the medical challenges Eli has been faced with he is overall a very happy and outgoing social butterfly. He loves movies, singing and shaking his booty to a wide genre of music from Disney classics to the Beastie Boys, he loves Thomas the Train, kicking butt at Mario Kart, and going to the beach, Disney and Universal! We are so very thankful for the support of our family, friends, community and Riley who are continually there to help us through it all! Eli has been in remission for 9 years now! Eli’s journey has taught us to treasure our time together, not sweat the small stuff, and live every day to the fullest! Live, love, and laugh like Eli "