Blue Jay

The road to the Children's Hospital in Sioux Falls, South Dakota seemed like it went on for an eternity. I was four, and I could not grasp the significance of what was happening. Although I do not remember everything, I know it was the end of 2002 or the beginning of 2003. The adults would only tell me that Jay was sick, so I did not understand why this was such a big deal to everyone. The hospital was tremendous and was filled with many different rooms. The ceilings towered high above me. Years later, it felt strange going back to the Children's Hospital and realizing how small it actually is. That day, we were going to visit my 10-year-old cousin.

Jay was more like an older brother to me than an older cousin. He had been having severe headaches and dizzy spells, and then he was diagnosed with an extremely rare form of cancer. My Aunt Becky and Uncle Danny found out that Jay had to immediately have emergency surgery to remove a medulloblastoma from the seventh ventricle at the lower back of his brain. This meant that he had to have a malignant tumor removed from his brain. Unlike a benign tumor, a malignant tumor is one that never stops growing. The tumor could have grown anywhere cerebrospinal fluid flows throughout the body, but this was the worst possible scenario. The mass was forming in the only area where cerebrospinal fluid is produced.

I started sensing how upset all of the adults were from their body language and began catching on to some of what was happening. My family was terrified because the doctors were not sure if Jay would make it through the initial surgery. I could see then why this was a big deal. They were there to say goodbye, just in case he didn’t make it.

Jay could do anything. To me, he was invincible. After the surgery, his head was shaved. I was shocked and nervous about talking to him. He looked extremely different -- weird. Laying there in that oversized hospital bed, Jay looked small and pale. To see the guy I considered an older brother in that condition had a considerable impact on me. Was this the same person that Lora (Jay's little sister) and I ran around with playing swords?

From Sioux Falls, Jay was taken to the Mayo Clinic in Rochester, Minnesota, for a lengthy series of radiation treatments, chemotherapy and physical therapy. I remember the mask they made to cover his face when they treated his brain with the radiation. Becky would come back and forth from the hospital to the Ronald McDonald House where she, Danny, and Lora would stay while Jay was having his treatments.

Our family went to visit, and we toured the Ronald McDonald House and the entire Mayo Clinic, visiting an extraordinary chapel, beautiful gardens, and historic statues. The kids staying at the Ronald McDonald House were always being given Beanie Babies. Mine was a unicorn named, "Majestic."

Jay's therapy went on for three to four months, but it felt like a year. Danny and Lora would come home to go to work and school, but Becky never left his side. She did a great amount of Jay's physical therapy herself, consistently moving his limbs to maintain his muscle mass and strength.

March 11, 2004, was Jay's Golden Birthday, and he was turning 11 from his hospital bed at the Mayo Clinic. We call came to celebrate. My family got him a giant, red Etch-a-Sketch to keep him busy at the hospital. The room was filled with balloons, gifts, and flowers, sent by Jay's class in Canby that missed him terribly. He was a great football player, a junior black belt at 9-years-old, and he loved to read, tell lots of bad jokes, and play video games. He also loved Pokemon. Jay had a couple of three-ring binders so full of Pokemon cards that he could not zip them shut.

I remember watching Harry Potter and the Sorcerer's Stone with Jay and Lora when it hit the theaters. Jay loved Harry Potter. My grandma ordered him first edition copies of the whole series as they were released, even after he passed. Jay would always get the Jelly Belly Harry Potter Bertie Bott’s Every Flavor Jelly Beans. The candy was just like in the movie - weird flavors and all. I continually asked him for some, and, naturally, he never wanted to share with me. He would give me the same kind, every...single...time: this powder blue one that tastes like soap. Of course, I ate every single one of them anyway.

When Jay was finally able to return home to Canby, Minnesota, everyone was elated! He was recovering and did not have to stay at the hospital anymore. However, the surgery had affected all of his physical functions. The procedure had paralyzed him because the doctor had to move around his brain to get to the tumor. Jay had to practically relearn everything, even how to speak.

Becky worked with him every day to make him stronger. Just like at the hospital, she would sit by his side for hours and move his limbs to keep the lactic acid in the muscles flowing. Eventually, he was able to walk with some assistance. Still, he had to be in a wheelchair or cruise around on his electric scooter. The surgery did not harm his personality or his funny side. Occasionally, he would give Lora or I rides on his scooter.

On December 2, 2003, during the time Jay was home and doing well, my mom got a call from Becky with terrible news. My Uncle Danny, at 37, unexpectedly had a heart attack in the night and died. Their world was again turned upside-down. Finally, when Becky, with the help of many friends and family, was able to put some pieces back together, and Jay's future looked hopeful, the cancer came out of remission. The medulloblastoma was growing again and causing swelling in his head. The prognosis was not good, and the family could not bear to put him through the traumatic, harsh treatments, and all those days of pain and sickness again.

Jay passed away in his bed at home on May 5, 2005. For the longest time, I did not understand why Jay had to die. No one had told me that he had relapsed. I had always thought he had died while in remission. It was something I questioned for many years until my mom told me he had relapsed. When the funeral took place, it had to be held in the Canby High School gymnasium because almost the whole town was there. Everyone was supporting Becky and Lora.

I vividly remember one thing in particular from Jay’s funeral, like it happened just yesterday. Before the funeral procession started, we went to go say one last goodbye. What I felt in that moment is indescribable. Jay treated me like a little sister the same as Lora. He used to pick on me incessantly. One of his favorite things to do to me was to make me hit myself. I hated this so much. No matter how many times I would tell him to stop, he never did. He would make me hit myself until I got so frustrated I would cry. We were both instigators, though. I used to call Jay ‘Jay Jay’ because of the cartoon 'Jay Jay the Jet Plane', and he despised it. I was thinking to myself ‘This has to be one of Jay’s tricks. He’ll wake up and start making me hit myself like he always does.’

It was a very somber moment taking that last walk up to his coffin. I wished nothing more for him to wake up. When my mom and I reached his coffin, I remember reaching out and laying my hand on Jay’s. In an instant, I felt reality come crashing down on me. Reflecting back on this now, I realize that as a young child, one does not really understand the significance of death. I didn't think young people died. This all changed for me on that day. On that day, I watched my older brother be lowered into the ground. On that day, I learned the value of life...and the meaning of death.

As morbid as this may sound, when a child sees an older relative die, they view it as something that just happens because they are old. A child’s parents seem ancient when they are young. I admit that I had this same view of Danny’s death. I thought ‘Oh, he’s old - that’s what happens.’ When an adult loved-one passes away, we understand that it was inevitable. Seeing an adult relative die is nowhere near the same as seeing a child lose their life.

I remember walking out behind the casket, carried by Jay's school buddies, and his other friends were making a tunnel out of our toy swords for us to walk beneath. He was buried in his Tae Kwan Do uniform from Korea with some special items from his childhood and the hospital that meant a lot to him. Jay was buried in a cemetery near his Uncle Mark’s farm, next to his father, at 13. We will always miss Jay and wish he was here.

In 2012, Jay would have graduated from high school. It was hard for my family to see all of his friends graduate. Two of Jay’s best friends, Travis and Keagan, had tributes to him at their graduation parties. I spoke to Travis some years later and we ended up talking about Jay. We were at the wedding of one of Jay’s other friends, Jordan. Travis talked about the first time he got to hear his name from his best friend’s mouth after the surgery.

Life must go on, but we must never forget. We have to let go of the pain and cherish the memories we made with him. Becky used to tell Lora and I when we were little that if we saw a blue jay then Jay was near. We know he is looking down on us right now with Danny from Heaven, and we will see them again someday.