On October 19th, 2020 Sammy came home from school with his second headache in 10 days. Both times he came home from school he would fall asleep for several hours, wake up and feel better. We thought they were possibly migraines. However, Sammy advocated for himself, knowing something wasn't right. He also had an angel in is corner, his school nurse. She called after school and encouraged us get him checked out. What we thought was going to be a routine check, took us on a different path when the doctors entered the room and asked to speak to us in the hall. They shared with us that a tumor was found on the left side of his brain, which was causing his headaches. The universe shifted. It was 12:38am, most of those who we knew were asleep, they hadn't felt the shift yet. As we were transferred to a different hospital, we knew our fight had begun. But first, how to tell Sammy. We had been at the hospital for several days, he was catching on that this was not normal. It was Wednesday, with help from the Child Life professionals, we shared with Sammy what the doctors found and did our best to answer his questions, cry with him and allow him to feel whatever he needed to feel. Sammy had two big questions, "Am I going to die? Will I be able to play baseball again?" If you know Sammy, those two question are intertwined. It is not an overstatement when Sammy says, for him, "Baseball is life." We did not know how to answer. So, we just hugged. I have never seen a stronger boy. Due to Covid, visitors were not allowed, even Sammy's older brother and sister. It was hard, he wanted his siblings. The day was a haze of information and emotions.The first prognosis was not good. A lot was discussed. The tumor was in a very difficult location. They believed that this was a type of cancer that would require surgery, but because of the location, permanent damage would be done to remove it. Because the tumor was on the left side of his brain this damage would affect his right side including the inability to walk, use his right hand, possibly not be able to speak. The possible side effects of surgery were numerous.
As all of this was going on inside the hospital, outside, our family, Sammy's brother and sister, our friends, our community, brought the love and support to Sammy. They took over the parking lot outside our window, holding signs, yelling for Sammy and singing GO CUBS GO. I don't wish this situation on anyone, but that sight from our window and seeing Sammy's face, having him know that he isn't alone was beautiful. We got to work on finding a second opinion and if there was someone, somewhere who specializes in brain tumors. All the while focusing on Sammy's most emergent concern, alleviating the pressure in his brain. The doctors believed the cause of the headaches was hydrocephalus, pressure on the brain. We prepared for his first surgery. We transferred hospitals again. Thankfully, we were able to spend one evening at home ahead of the first surgery Friday morning. Sammy got to see his brother, sister and grandparents. We all congregated in hope and to compile strength. The surgery went well, they were able to install a drain in case pressure built up again. We returned home on Saturday and began to work with his pediatric neurosurgeon out of St Jude. Through the amazing assistance of our family and friends, we were able to get Sammy the care he needed in a timely manner. After what seemed like an eternity, four weeks, we were heading to St Jude and Le Bonheur Children's Hospital in Memphis. It is here that our miracle happened. During this time one thing remained constant, Sammy's strength and courage.
We were headed to Memphis. We were so overwhelmed with love and support. The doctors at St Jude took on Sammy's case. Dr. Klimo, our pediatric neurosurgeon, was absolutely amazing throughout, answering our questions and guiding us to find the best treatment for Sammy. Surgery to remove the tumor was scheduled for the middle of November. We made our way there and Sammy was admitted into Le Bonheur Children's Hospital. Le Bonheur is where procedures are done and then kids are transferred to St Jude for further cancer treatment if needed. We were blessed to have an incredible team of doctors and nurses caring for Sammy and continuing to guide us through this scary journey. The resources at St Jude and Le Bonheur are best-in-class, and have the specialized experts who understand how to protect Sammy and fight this tumor. After getting the imaging needed, Sammy went into a 7 hour surgery. There is no way to describe that period of time, it was the longest 7 hours of our lives. It was hard to catch our breath. The news at the end was worth it all, Dr. Klimo and his staff were able to successfully remove the entire tumor! Sammy came back to us and when he woke, his smile, his "Mom," his right hand movement was nothing short of a miracle. The day after his surgery Sammy had two seizures, which was explained to us as not uncommon due to the path they had to take to remove the tumor. It was extremely scary. The doctors and nurses quickly did what was needed to get them under control and is still something we are monitoring and he takes medicine for daily. These organizations were an answer to our prayers. Our time in Memphis, at Le Bonheur as well as the FedExFamilyHouse, was amazing! Each and every person there has a passion to help children in any way they can.
After surgery, Sammy had some weaknesses due to the tumor's location. Dr. Klimo believed these would need therapy but would be temporary. Sammy began seeing speech, occupational, and physical therapists while at Le Bonheur. With their help he was able to gain confidence, they gave him the tools to regain some strength in his right side as well as work through some of his difficulties communicating. Once home, we continued those therapies at Madonna Rehabilitation Hospital. This was a big challenge for Sammy, he worked hard on cognitive aspects, memory, communication and physical enhancement. Every provider from nurses, doctors, therapists, would ask Sammy what motivates him. Every time, without hesitation, Sammy would reply, "I want to play baseball again." Once again, we had amazing therapists and a strong support for Sammy. While at Madonna, Sammy also started the TLC program and began working with a wonderful teacher and advocate for Sammy. With her help as well as the help from his teachers at his school, Sammy was able to slowly transition back into school and be with his friends.
Sammy's team in Memphis has been outstanding. Dr. Klimo and Dr. Shah continue to see Sammy for scheduled follow-ups to ensure he remains cancer free and he is healing as he should. His scans were clear in February! We will see them both again this summer. We remain extremely grateful for finding these specialists and their empathic world class care for Sammy!
Through this process we have learned incredible gratitude and also, that not everyone has a support system like ours. We know that Sammy and our family would not be where we are without this support. Throughout this entire path that we continue to be on, we have been in awe of Sammy's strength. He leads us on this journey, he carries the power of HOPE and we will continue to help him spread that through the Foundation's work. We want to give back to those organizations who aid families like ours as well as assist families that are fighting similar fights and need help.