Parents fill cancer-stricken son's last months with love and happiness
Ayden Zeigler-Kohler, a nine-year-old from Springettsbury Township in Pennsylvania, was once a lively child: running, jumping, playing football – he was always on the move and loved all sports.
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But in August 2016, everything changed for Ayden and his parents. In the middle of his football training session, he suddenly collapsed.
In the hospital his anxious parents were told he only had a concussion. But Ayden didn't get better — his movement and speech were actually getting worse. After further examination the doctors had to give Ayden's parents the terrible news: he had cancer, there were two tumors in his brain.
They were dealing with a diffuse intrinsic pontine glioma (DIPG), a rare form of brain tumor – in North America and Europe combined, only 300 children a year are diagnosed with this type of cancer. Unfortunately, DIPG is particularly dangerous and very difficult to cure. Less than 1% of children who fall ill survive the next five years, making it the deadliest form of childhood brain tumor.
The tumors couldn't be dealt with surgically and the doctors estimated that Ayden had maybe only 12 months to live.
His father, Bill Kohler, was an Iraq War veteran and had been a paramedic in the army. Now he could only watch helplessly as his son became weaker and weaker. He researched every cure imaginable and every possible therapy, but he always got the same answer – Ayden was beyond medical help.
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After Bill had spent months devoting all his energy to finding a cure for his son, he stopped to reflect on the precious time he still had left. He and Ayden began spending every moment together, going to football games and taking long walks in the woods.
The weaker Ayden became, the harder it was for his parents to do the things he loved with him, but they didn't give up. With the help of a social worker, Ayden created a wish book, recording the things he wished for the most. His parents used his entries to fulfill his every wish as best as they could.
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Ayden wrote down a heart-rending wish in his book: "If I am very sick and may die, then I want to be in the woods."
Although he was struggling on bravely, Ayden's health was rapidly deteriorating. Soon he could no longer walk, could no longer feed himself, and finally, even breathing became an agonizing torture. Then he asked his father the hardest question a parent can face from their child.
"What if I don't get better and die?"
Bill said to him: "No matter how this turns out, son, I will be by your side. The whole way."
His father's words helped comfort Ayden in the last days of his illness. On March 22, 2017, after a brave fight and just eight months after his terrible diagnose, Ayden died in his parents' arms.
The grief that Ayden's parents and siblings have suffered is worse than most people can imagine. But they were left with the knowledge that his last months were filled with love and closeness and that his father spent every moment of his last week with him.
DIPG, the aggressive type of brain tumor that killed Ayden, mostly affects children between the ages of four and 11. Most children who develop the tumors die within a year. Every year, May 17 is marked as an "Awareness Day" for DIPG, a reminder of how important it is to promote research into cures for this merciless illness so that some day others won't have to endure the terrible loss that Ayden's family experienced.