door Rosalie Budding
Dani was a wonderful child, says Nancy, who is the mother of three boys. “Maybe he was so fantastic because he was only on this earth for such a short time. Dani was right in your heart. He was a very cheerful and easy-going guy, he made contact with everyone. Sometimes you have children that you have your hands full with, but he wasn’t like that at all.”
Dani had no typical symptoms of leukemia. Nancy: “He was tearful for a while, which didn’t suit him. As soon as we put him on the ground he screamed. One day my partner sent a photo of him while I was at work. I was terrified. His face was deformed and he looked deathly pale. I knew immediately: this is not good. We had to go to the emergency room immediately. I said to my mother, “I think he has cancer.” Dani received all kinds of tests at the ER. The wait was so long. I knew they had found something. Two doctors walked up and told us the news: ‘Dani has cancer.’ They didn’t know what form, but it was serious. I was really in shock and had palpitations. The first thing you think is: my child is going to die.
Bad blood values
Dani had to go to Erasmus MC Sophia the next morning, but ‘just’ went home with Nancy in the evening. “I didn’t understand this, because he was very ill. At Sophia it turned out that his blood values were very poor. He had blasts (malignant white blood cells, ed.) in ninety percent of his body. His whole body was full of cancer. The doctors said: we’re just going to give him chemo, we have to start, otherwise he might not have another week.”
After ten days, Nancy and her partner heard that it was AML, an acute and serious form of blood cancer. “Dani would receive five rounds of chemotherapy and have to stay in hospital for six months, it would be that hard. The doctors wanted to see how he would respond to this. You have to arrange everything at once. Also for our other son, Rowen. Dani’s first treatment was very intense, he was sicker than sick and quickly lost his hair. He could not sit, stand or eat. He was in so much pain that he was on six morphine pumps, moaning and groaning. Miraculously, Dani recovered well and took the treatment. Our sweet family made a schedule to help us, so that we could take a shower or go outside for some fresh air. It was a rollercoaster that you say ‘you’ to. You want to get out, but you can’t. There was only more misery. The world lived within four walls and nursing became your family. We wanted to keep life as normal as possible for the eldest. He and Dani were best friends, four hands on one stomach.”
Back to start
The five treatments caused Dani to become very ill. He was constantly bothered by bacteria, developed meningitis or suddenly had fungus in his brain. He was declared clean in March 2018. But because it was such a special variant, he had to have blood tests every month. There was a good chance it would come back. Nancy: “Things went well for ten months. Our doctor said, “If it doesn’t come back after three months, you can breathe.” But in the eleventh month it was wrong. His blood results were different and he had to be readmitted. Dani had just turned 3. Then the realization dawns on you: is this his last birthday?
At one point, Nancy was alone in the hospital. “My wife had just left. I was called into a room. They asked: ‘Would you like to call your partner?’ It couldn’t wait. Then the news came: Dani was resistant to chemotherapy. The amount of blasts had increased from thirty to ninety percent in one go. It was really sad to hear this on my own. They decided to give Dani, who was very weak, a treatment that is normally given to children who are entering a stem cell program.
Much too heavy
Even when he was seriously ill, Dani rode his bicycle through the hallways. The oncologist said to me: ‘Adults with this chemo end up in the ICU, and your child is still cycling through the hallway.’ Dani was so strong. The outcome was not as hoped. He still had six percent blasts, instead of zero. The doctor said: ‘We have to continue straight away. Otherwise we’re back to square one.’ Nancy becomes emotional when she talks. “Then it was done. It was way too heavy. Dani vomited blood and felt short of breath. The pulmonologist said that he was so weak from fighting that he had to stay asleep for the time being. His organs started failing.” Nancy calls the IC hell on earth. “So many children died that week. On April 26, the doctors said: ‘Dani will die today.’ All our family came to the Ronald McDonald House in Utrecht, where he lay. It was so nice that we weren’t alone. Dani completely disconnected and died in our arms. His brother Rowen was also there.
The funeral was very beautiful. Dani lay in a basket in rainbow colors, with a big heart on the front. There was a beautiful presentation with photos and songs by Baby Shark, he was a big fan of that. But also Live by André Hazes was played. He always sang along with that at the top of his lungs, even when he was ill. We have asked people – instead of bringing flowers – to donate to the Cliniclowns. That put a smile on Dani’s face, no matter how sick he was.”
Choose life
Nancy doesn’t know how she got through the first year after Dani’s death. “I was sitting at home because I was being stared at everywhere. I didn’t want anymore. You always think: you read this in a newspaper or magazine. But now we are the main characters in this story. My oldest says, “I often cried in secret, Mom, because I didn’t want to burden you.” Dear Rowen, I have so much admiration and respect for him. Because of him I chose life. In April 2022 we had a third son, Joah Dani. He provides a lot of light and love. That’s not surprising, because he looks exactly like Dani. Rowen always says he has two brothers. He photoshops Dani into a family photo, otherwise he will miss him. That’s why we’re always together.”
2023-09-14 11:00:00
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