Photo/IllutrationThe diary, crafts and favorite pictorial books of first-grader Shuto Wakabayashi are displayed at a "being-together-forever" ceremony in Kyoto’s Yamashina Ward on Feb. 8. (Takeshiro Tokunaga)

  • Photo/Illustraion

KYOTO—Shuto Wakabayashi would have only 16 months to live after being diagnosis with brain cancer.

He spent each of those days trying to fulfill his dreams and seizing the moment.

When he lost control of his right hand, he learned to write letters with his left hand. And as the disease sapped the strength from his body, he still participated in a school sports festival.

Shuto died on Dec. 21 last year. He was 7 years old.

“He was determined to do his best until the last moment,” his mother, Mina, 48, said, fighting back the tears. “I am so proud of him.”

Mina knew something was wrong with Shuto when he accompanied her on a business trip to Germany in September 2017. The boy could not use the muscles in his right extremities.

A doctor in Germany found that Shuto was suffering from brain-stem glioma, a type of brain cancer.

The tumor emerged in an area that made surgery impossible. The only effective treatment was radiation therapy, but the doctor said even that could not continue for a long period.

Mina rushed Shuto back to Japan and had him admitted to a hospital on the day of their arrival.

Shuto later lived with his five family members: Mina, his father, Naoto Takemura, 48, and his siblings.

After being discharged from the medical institute, Shuto entered Ryogaoka Elementary School in Kyoto’s Yamashina Ward in spring 2018 instead of attending a class set up in the hospital.

He said he wanted to go to school, study and spend time with his siblings.

In April that year, Shuto’s condition improved, and he was able to run around and ride a bicycle.

But from around May he got tired easily, and in July, he started having difficulty walking and moving his right dominant hand.

So he decided to use his left hand to write.

In August, the first-grader was learning to write new Japanese characters, but he kept erasing them because he did not like what he had written. Finally, in frustration, the boy threw his pencil.

Mina asked Shuto, “Which do you prefer: doing what you can do or not doing it at all?

Shuto continued to cry and never did answer the question. But after that, he never showed such frustration or impatience.

In late August, he underwent a second radiation treatment at a hospital in Osaka. During his hospital stay, Shuto continued to study and completed all of his homework for the summer holidays.

His condition gradually improved, and he was again able to write with his right hand.

On Oct. 3, Shuto joined his school’s sports festival, threw balls at a hoisted net in the “tamaire” game and participated in a dance performance. Shuto also entered the 50-meter race, and completed the full distance on his feet while being supported near the finish line.

In mid-October, however, the effectiveness of the therapy wore off.

“I felt that his time was running out too soon,” Naoto said about that period.

Shuto turned 7 years old on Oct. 28 at a hospice tailored for children in Osaka. He played in a make-believe secret base with his 11-year-old brother, Haruto.

A birthday cake was brought in, and Shuto smiled in front of it even though he lacked the strength to blow out the candles.

In November, his condition worsened, and he had no choice but to write letters with his left hand again. His parents bought him 4B pencils to make it easier for him to write.

Shuto visited the Universal Studios Japan theme park in Osaka on a buggy, and wanted to jot down the experience in his diary.

It took him several days to write what happened on that day. And it was clear from the way the letters became lighter and lighter that he was losing more strength.

In December, he could attend school on only four days. And soon, his only means of communication were to move his eyeballs or use his left hand to grip a finger of Mina or Naoto.

Mina and Naoto took turns watching over the boy at his bedside, where a tank fed him oxygen and a machine removed phlegm from his throat.

Shuto had previously said, “My future dream is to become an archaeologist, a zoologist or a scholar of dinosaurs.”

He was one of the group members in charge of taking care of animals at his school.

Shuto used to think up questions about animals or ancient creatures. He and other group members quizzed their classmates during recess on Tuesdays.

Dec. 18 marked the last day Shuto attended the school. It was a Tuesday, and another quiz was held.

Three days later, on the day of the closing ceremony for the second term, Shuto took his last breath, surrounded by his family at their home.

At the wake, Shuto’s 14-year-old sister, Rimi, said to the attendees: “Although Shuto is my younger brother, he is a person I could respect. I thought that even though his life was short, he had met nice people.”

In February, a “being-together-forever” ceremony was held in the gymnasium of the school, based on a suggestion by eight students in the fifth and sixth grades.

All students showed up at the event. Mina, Naoto and Rimi were also invited and attended the ceremony.

Shuto’s school life and his dreams were conveyed to the attendees.

Mina, Naoto and Rimi later attempted to express their gratitude to the eight students who came up with the idea, but they could not hold back their sobs and tears.

Instead, the family members firmly held the hands of the eight students.

The eight students later told a reporter, “Shuto will continue to stay with us in our hearts.”