Not So Super-Bowl
Leukemia was giving Nicholas a run for his money. Nicholas started the new year of 2011 recovering from pneumonia, and trying with all he had to rid his body of the residual leukemia cells he just could not shed. Once he could finally reach 0% leukemic cells the doctors would proceed with the next item on his protocol- his bone marrow transplant. We already knew his brother Thomas’s cells were a “perfect” match. We were scared, but optimistic as we had a renewed hope of Nicholas being cured.
We were in a bit of a holding pattern, but it was a waiting game that allowed Nicholas (and me) to remain at home for a considerable amount of time. We had found a balance between ativan, zofran and lorazepam for many of Nick’s side effects and what could be taken along with his numerous chemotherapy medications including asparaginase, vincristine and methotrexate. Weekly trips to the clinic continued, but in the meantime some of life seemed normal.
Nicholas was able to watch a few of his swim team’s meets, attend a spaghetti dinner or two and even get out and see a few friends. One of those friends was Ben Kirby. Nicholas and Ben were friends at school and through scouts. They didn’t really hang out at each other’s houses, but when going to friends they often ended up at the same place at the same time. They had many things in common including their genuine, good to the core souls, love of life, family and friends.
Ben and his dad, Dennis had heard about Nicholas’s visit to WBEE station and how it was a fabulous time, but that Nicholas didn’t get to go on the air. Mr. Kirby had a friend that did a weekend morning show for WHAM 1180 and he arranged for Nicholas (and Jay) to go visit and be a guest on the show. Nick was scheduled to be on the show on Super Bowl Sunday.
Since being at the BEE, Nicholas caught the radio bug and was thinking about sports broadcasting as a career option so he was really excited to get to the studio and be “on air”! As well as he’d been feeling lately, he also had plans to watch the Super Bowl at another friend’s house and maybe even spend the night, which would have been a first since being diagnosed.
The Kirbys picked up the Kovaleskis before 6:00 that Sunday morning. Jay was equipped with all possible medications for every possible scenario I could think of, but Nicholas was just so excited he didn’t want or need any of it. They made it to the station in good time- since not many people are on the roads at that hour on a Sunday. They got a bit of a tour and were introduced to Mr. Jim Salmon. Jim explained how the morning would go- at the end of each segment they would bring Nick in and he’d get a chance to talk and answer some questions. Mr. Kirby was sometimes a guest so he participated in the conversation too. Nicholas told the story of his cancer with a brevity that let everyone listening know that as far as he was concerned, he’s “got this”. Nicholas tried to get Ben to join in, but Ben found more pleasure in watching his friend in the limelight. During news segments Ben and Nicholas played pool in the green room area and found lots of opportunity to laugh together creating special and lasting memories.
A play-by-play isn’t necessary for you to understand what a special day this was for Nicholas, but because our supply of memories is limited, somehow chronicling every moment is a need I’ve had since the day he died. It’s as if I’m searching for proof that my son’s life was well-lived and that he was happy.
After the radio show, Nicholas went home. I was happily grocery shopping for all “the snacks” the rest of us would munch on at home during the Super Bowl. Spending the day together was long awaited and each of us was counting on it for our own needs and reasons. Michayla and I were ready to spend the day preparing all the goodies and having some desperately needed girl time. My girl missed me a lot these days, she understood her brother needed me, but it was still hard not to have our time too.
Getting ready to check out, my cell phone rang and it was Jay. I answered, thinking he was going to add to my list, but he wanted to know how soon I’d be home. I was still calm when I asked what was up, but that quickly dissipated as he described to me how while the boys were playing video games Nicholas suddenly felt his left side go numb. His left arm was dead weight and he couldn’t make it move. His speech was slurred and the left half of his face was droopy and unresponsive…
Had I not already been in the checkout line, I would have left my grocery cart and run from the store. I held it together, however; Jay said he called Dr. Jeff (Nicholas’ oncologist) and he wasn’t sure what was happening or why. Nicholas was lying comfortably on the couch and wasn’t incoherent or unconscious. I just needed to get home as soon as I could.
When I arrived back at home Nicholas seemed a little more himself, but we loaded him into the car and we headed into the hospital. Nicholas was still feeling the effects of whatever “it” was that happened to him...yes it sounded like he had a stroke, but how could that be? He didn’t have heart problems. It didn’t make sense at all. Jay and I thought that by going to the hospital they would get to the bottom of whatever it was and make it better.
During the ride, I’m continuously on the phone texting my friends to try and help me with Michayla. I was very worried about Michayla, whom I left in tears. I had to take care of Nicky and as a result our plans together were just canceled. I was trying to find some sort of consolation for breaking her heart. She just wanted her mom to stay with her as promised so it was difficult to mollify. All of this when suddenly Nicholas sat up in the backseat and announced, “I’m better now!” The numbness on his left side had subsided. Relief flooded both Jay and I. Now Nicholas wanted us to turn around and go home immediately, but we wanted to continue on and let the doctors check him out anyway.
The remainder of the ride was a battle. Nicholas complaining about how it was “stupid” to go there when he felt okay now. He wanted to go to his friend’s house. The hospital takes so long to do anything. He felt fine. Couldn’t we take him tomorrow instead. He felt better now. He didn’t want to go. He just wanted to go home. It was heartbreaking for us too, but whatever happened scared us. We had to know for sure he was okay so despite his very strong protests we continued to the hospital.
Our grace upon arrival came when Nurse Stephanie (Nicholas’s only favorite ER nurse) was on duty and made sure he was her patient. We had a couple hours until the game started so she was trying her best to get him home before that. Nicholas had a CT, fluids and the usual slew of doctors in and out of his ER bay. And yet it appeared nothing was wrong now, he no longer had symptoms so he was allowed to go home. Symptom free so the doctors weren’t going to keep him. We were going back home until Nicholas reached up for my hand and said, “Mom is happening again…” And everything went numb again. His entire left side was limp and his face was drooping. Instead of going home we went upstairs to ICU. The Super Bowl came and went without any fanfare. The TV was on in his room when it started, but Nicholas couldn’t even look up at it to watch.
With results of a telling CT- Nicholas had a stroke. A STROKE. How could this even happen? Yes Nicholas had leukemia, but he was healthy otherwise, so what was wrong now? The strokes continued through the night. It was discovered the next day that a stroke was an extremely rare side-effect of the methotrexate Nicholas was taking. The resolution was cough syrup. Dextromethorphan was able to undo the effects in Nicholas’s brain causing him to stroke. We were in the hospital a full week before he was stroke free and back to normal functioning, but not before PT and OT, and swallowing therapy. Nicholas fought his way back and we thought we had won him his life back.
Less than 5 months later, Nicholas died. The recording of that WHAM radio show is one of the only audio recordings of Nicholas’s voice that I have. Incredulously Ben is now in heaven too, with Nicholas. I hope they are playing pool and watching football today. All of this, these thoughts and memories are the ones that flood my head and my heart every Super Bowl. The weight of my memories are heavy today. I love you, Nicholas and my whole heart misses you every day.