Nickolaus Bedwell was only four years old when he died of leukemia on July 20, 2003. His father, Ronald Bedwell, who composed his son’s obituary, calls Nickolaus a hero, a person who lived the way he wanted to for every minute of his young life, despite battling physical pain for the majority of his years.
Nickolaus was sick more than he was healthy in his four years. When he was 26 months old, he developed a cold that would not go away. Then, when he fell from his parents’ new chair, a nasty purplish-blue bruise appeared on his skin, a bruise that seemed too dark and large for a small fall. He was fatigued and slept for long periods of time, and eventually turned pale.
His parents took him into their physician’s office and waited while Nickolaus underwent blood tests. After a few hours, the doctor emerged to tell Ron and his wife Sheryl that either Nickolaus was very ill or his machine was broken. Ron and Sheryl immediately took their son to the Cancer Clinic, where further blood tests showed Nickolaus had over 257,000 white blood cells.
“The typical normal white cell count for a kid, and I think all of us, is between 6,000 and 10,000,” explained Ron Bedwell. “Usually, half of these are neutrophils, which are infection-fighting white blood cells. A leukemia patient with a white blood cell count of over 100,000 is considered to be high risk, and Nickolaus’ count was 257,000 when he was first diagnosed. His bone marrow was so packed with cells that it was literally trying to push his bones apart.”
Nickolaus was diagnosed with leukemia on December 1, 2000 and given a 60% survival rate. After his first relapse, his survival rate dropped to 45%. His first time in the hospital, Nickolaus had to undergo surgery to insert an inline catheter (also called a broviac or port). The inline catheter, a tube inserted into the body at the chest, is used to administer chemotherapy to leukemia and other cancer patients. Ron Bedwell remembers vividly that day at the hospital.
“It was an amazing thing,” said Ron. “During the first hospital stay, Nickolaus had needles in both of his arms and boards under his arms to keep them flat. He was being pumped full of fluids and medicine. Finally, when the nurses took the needles out, they realized they were bent. Nickolaus hated the needles so much that he had bent them while trying to get free. I couldn’t help thinking—that’s my boy.”
Though he never played on a team, Nickolaus was an avid soccer fan throughout his short life. While in remission for 22 months following his initial diagnosis and treatment, his parents were always a little wary to let him out of doors amid thousands of airborne germs, but Nickolaus refused to be sidelined by his illness. He was never officially on a soccer team, but he attended his brother’s practices throughout his remission period. In fact, he’d often throw fits when it was time to leave, and his father often had to drag him off the field.
Nickolaus was never afraid to go up against the older players at practice. Sometimes the kids would let him score goals, but other times Nickolaus would beat his opponent and score all on his own. If he did get nailed by the ball or another player, tears would come, but never for long, as Nickolaus would be back out on the field in no time. During games, Nickolaus would follow his father (the coach) up and down the sideline, getting run over sometimes when the ball switched directions and Ron started backup the sideline the other direction. But Nickolaus felt like he was helping, and he never minded the inadvertent collisions on the sidelines. Even at three and four years old, he had a great dribble—tight and fast. He could even dribble with his head up. Ron spent a lot of time with Nickolaus watching soccer on TV, his favorite teams being the Brazilian national team (Ron is part Brazilian) and the San Jose Earthquakes.
Nickolaus relapsed for the first time on Election Day, 2002, after spending 22 months in remission. When the relapse happened, many friends of the family expressed surprise along with their condolences—they never knew that high-spirited Nickolaus had leukemia. The doctors told the Bedwells that Nickolaus would need a bone marrow transplant.
One donor became available in April of the following year, but Nickolaus relapsed again on April 23rd, 2003. Doctors tried frantically to get him back in remission before May 28th, the date of the transplant procedure (a transplant procedure is impossible without a remission phase). On May 19th, Nickolaus and his family found out that the ‘blast cells’ (leukemia cells) had come back with a vengeance. The doctors switched medications, but Nickolaus’ blood, though ‘clean,’ never reached the remission phase. A June 4th bone marrow biopsy showed the marrow half-packed with blast cells, and by June 26th, the marrow was almost full of the leukemia. The Bedwells opted against experimental and intensive medication for their son who had already been through so much pain, and Nickolaus died on July 20, 2003.
Although the Bedwells experienced the most difficult spring and summer of their lives in 2003, they are glad that Nickolaus was able to spend the last weekend of his young life surrounded by loved ones. He exhibited wonderful energy and spirit in the weeks leading up to his death, although he was suffering so much physically. The family took a trip to Rehoboth Beach, Delaware where one grandmother lives and where Nickolaus’ favorite soccer store is located.
They also went to the other grandmother’s house over the July 4th weekend in Pennsylvania and watched fireworks. On the weekend before his death, all the grandparents came down for the weekend, and it was Nickolaus’ best weekend physically since the second relapse. Everyone played soccer, had water gun fights, laughed, and ran around. Nickolaus hadn’t been able to walk for over a month. Nickolaus had been having trouble with regular activities, as he’d been in a lot of pain caused by steroids and chemo, but he had a lot of strength over that weekend.
In the days leading up to his death, Nickolaus had a fever between 103 and 105 degrees as his body fought desperately against the blast cells. Although the doctor warned the family that he might slip into a coma once his blast cell count was over 80%, Nickolaus remained conscious almost to the very end. He wasn’t lucid on the Friday night before his death, but on Saturday he felt better and participated in conversations until another final downturn. The last video Nickolaus watched with his father that Saturday was the story of the Brazilian national soccer team.
At the funeral, friends and family kept repeating what an inspiration Nickolaus had been in his short lifetime. The Bedwells were deeply moved by the number of people who came to the funeral, even some people who had never even met or known Nickolaus, but who wanted to come out and show their support for Nickolaus and the Bedwell family.
The hardest thing that Ron Bedwell has ever had to do was to write his son’s obituary following his death. Here, in his own words, is a description of his hero, Nickolaus:
Nickolaus Allen Bedwell, age 4, of Mechanicsville passed away on July 20, 2003 after a long battle with Leukemia. He was a wonderful, loving son and brother, as well as an avid soccer and Scooby-Doo fan. He fought hard for as long as he could. Much like his favorite animal, the Eagle, he lived his life with Great Strength and Courage, he was Proud and Fearless, and in the end, as he spreads his wings, Freedom from the pain and disease he could not overcome.
