Family with two sick children looks back on a terrible year: ‘Nothing was fun’

Linda de Lepper and her family from Eindhoven experience 2023 as a nightmare that you as parents never hope to find yourself in. First, daughter Isa (8) was declared terminally ill, and during the autumn holidays doctors also found a rare form of cancer in her brother Milano (11). And expectations for 2024 are no better. “I’m really not looking forward to that,” says mother Linda.

She tells her emotional story from the Princess Maxima Center children’s oncological hospital in Utrecht. The rollercoaster, the sadness and the fear of 2024.

The family with four children has been living apart for ten weeks. Isa has a tumor in her head and is at home a lot. Their son Milano has leukemia and has been in the children’s hospital in Utrecht for treatment all this time. “He keeps getting sick after chemotherapy and also gets stomach bleeding,” says the mother. “He has become so thin. His little body is so weak.”

“Our lives have been turned upside down for months.”

All the while, parents Erik and Linda have to divide the care of their family. One week she is in the hospital and her partner is at home with the family, the next week the roles are reversed. “Our lives have been turned upside down for months. We only see each other when taking turns in the hospital.”

On Christmas Eve, the doctors allowed Milano to go home for a few days to celebrate Christmas together. Probably our last Christmas together. “We really enjoyed it. On Christmas Eve we sat in our pajamas, played games and watched all the Home Alone films. Isa thinks that film series is the bomb,” says her mother proudly.

“This could be our last Christmas together.”

“Then we took down all the mattresses and slept together in the room. That has been a tradition with us for eleven years. On Christmas Day we went out for dinner with my parents and my brother’s family.”

Yet this Christmas felt different for the Van Orden family. “I didn’t really have a Christmas feeling. The whole evening I was thinking that this could be the last Christmas together,” says Linda.

“We just took as many photos and videos as possible…”

“In my mind I was with Isa. I saw how she enjoyed Christmas Eve. As a mother I also enjoyed that, but it also gave me a very mixed feeling. We only took as many photos and videos as possible…”

Unfortunately, Christmas ended less pleasantly for the family. On Boxing Day, mother Linda had to return with Milano for another chemo treatment. Planned. But things unexpectedly took a turn for the worse with Isa. “She was taken to this same hospital by ambulance in the evening,” says her mother.

“Not enough red and white blood cells,” she adds. “A consequence of the chemo Isa received last week.”

“We don’t have any nice memories of this year.”

The couple will probably end 2023 in the hospital, with their two sick children. The other two are being cared for at home by family and friends. “It was a terrible year. A year of being in and out of hospital. We don’t have any nice memories of this year,” says the mother.

The family has received massive support over the past year, thanks to a fundraising campaign which was set up by friends. Nearly 65,000 euros have now been raised and the family can still use all the financial help.

She doesn’t dare to think much about 2024 yet. On January 3, Isa will have another MRI scan. The doctors will then check whether the tumor has grown in her head. “We have already heard from the hospital that we have to take the worst into account.”

“I could only make one wish for 2024.”

“Even if the tumor has not grown but has remained the same, the treatment will stop. And then she will not have much longer, I fear. Milano still has a long way to go, if the treatments work at all.”

Mother sighs. “I could only make one wish for 2024. Then I would wish that I would get that cancer and that the children would be healthy again. But unfortunately that is not possible.”

Isa still wanted to get her swimming diploma, and she succeeded.

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