There’s something in Lisa’s head that shouldn’t be there

Lisa is two years old when she stops eating. She hasn’t been hungry for weeks. The parents are surprised, but don’t want to go to the doctor right away. But Lisa is getting thinner and thinner.

“At a certain point it became clear to us that something was not right,” says father Sascha, who invited them for lunch. He made ratatouille with rice. For his two children there is mashed potatoes with fish fingers, which they eat in a hurry.

In the summer of 2020, Sascha can still put delicious things on the table: Lisa just doesn’t eat anything. She also doesn’t want to drink milk. She is getting weaker and weaker, the parents are getting more and more worried.

You go to the pediatrician who did his training in Germany. He soon turns to a genetic disease the two children have: neurofibromatosis.

In Germany, an MRI is standard for this disease, the doctor explains to the parents. In Switzerland this is not included in the protocol, although there is a slightly increased risk of cancer with neurofibromatosis. He therefore recommends having an MRI of the head.

No longer wanting to see Lisa’s condition worsen, the parents agree. The MRI promptly gives a finding: there is a tumor in Lisa’s head. It’s the size of a golf ball.

The tumor presses on the hypothalamus, so Lisa is no longer hungry. The tumor also puts pressure on the optic chiasm, the junction of the optic nerves. If it continues to grow, Lisa is at risk of going blind.

The problem: The tumor is located in the middle of the brain and therefore cannot be surgically removed. An intervention would cause too much damage.

“In the beginning it is a huge shock when the doctors say that the tumor cannot be removed,” says Sascha. “You wonder: why us? Why Lisa? The first days were hell for me.”

Sascha struggles with fate for about a week, after which he gains new courage. “At a time like this, there is only one direction,” he says. “Forward.” He often jogs and has competed in triathlons, says the man in his mid-40s. “Sometimes you can’t do it anymore and you keep going anyway.”

The doctors inform the family about chemotherapy, which theoretically can stop the growth of the brain tumor. The experiences with this are good, but the therapy does not work for all children.

Sascha and his wife Viola opt for therapy. However, it cannot be started immediately. Lisa has to arrive. She gets a feeding tube through which she is artificially fed. Lisa’s parents have to give her liquid food three times a day. Each process takes 45 minutes.

Lisa can no longer go to the nursery. This is too delicate because of the gastric tube. Mother Viola, who can no longer work as a result, takes care of the children. “Full-time care often harms the families of children with cancer financially,” says Sascha. “In many cases, a parent has to give up the job.”

Chemotherapy will start at the end of summer 2020. Thanks to artificial nutrition, Lisa has sufficient strength again.

Still, the five-year-old does not like to think back on the stomach tube she has to wear for almost six months. “It’s disgusting,” says Lisa. She points to a picture of a tube sticking out of her nose. “I hope my dad never has to have it.”

Lisa has to go to the children’s hospital for chemotherapy 72 times. Once a week for eighteen months. A session lasts approximately 15 minutes. The doctors insert a port catheter for Lisa. The medicines enter the vein directly through this entrance. The port is still in Lisa’s chest today.

During the treatment, the corona virus is rampant in Switzerland – a difficult situation for the children’s hospital in Zurich. “The nursing staff was tense,” says Sascha. “The coronavirus is more dangerous for children with cancer than for healthy children. Because their immune system is weakened.”

After the first sessions, Lisa often feels nauseous and vomits. It happens that the gastric tube slips out. For Lisa this meant: back to the hospital, tube back in, again the “disgusting” feeling. Sometimes even twice a day.

However, it is amazing how much strength Lisa has developed in the situation, says Sascha. “She didn’t process it the way we did. She just went to the hospital and joined in. The treatment was something normal and she took day after day.”

At some point, the parents learn to insert the feeding tube themselves. The task bothers Sascha. “Your daughter is two and a half years old and you must insert the tube through her nose into her abdomen while she is fully conscious. That’s difficult.”

In these difficult times, Sascha and Viola find support at the Sunshine Foundation, which supports children with cancer. At the summer camp in Lenzerheide, they talk to other affected families and realize that they are not alone in their fate. “This exchange was very important to me,” says Sascha. Each year, approximately 300 children and young people under the age of 15 are diagnosed with cancer.

During the first few weeks, the family has no idea whether Lisa’s therapy is working. Only an MRI after three months should yield the first findings. The tension for this appointment is great for Sascha and the family.

But the fear gives way to a first relief. The chemotherapy is working. “The joy was enormous,” says Sascha.

Despite the initial success, there is still a long way to go. Only one sixth of the therapy is through. It is the moment when the restaurants in Switzerland have to close for the second time due to the corona virus. One morning, not only the gastronomy is closed, public transport is also closed. It has snowed so much that there is no progress in Zurich. But Lisa has to go to the children’s hospital for therapy.

Sascha does not want to miss the appointment, grabs a sleigh and pulls his daughter through the city for an hour and a half. The therapy also takes place on this day. There is only one direction left: forward.

The therapy not only trains Lisa and her parents, but also her brother, who is two years older. He wonders why his sister always has to go to the hospital and why his parents are so worried. “Lisa tolerated the chemotherapy easily given the circumstances, but it wasn’t so easy for her brother,” says Sascha.

Lisa is getting stronger now. The gastric tube can be removed. However, the doctors cannot guarantee that she will be able to eat well again after six months.

Until the end of chemotherapy, Lisa has to have an MRI check every two to three months. Nervousness increases for these appointments, but the doctors can report good news: Lisa’s chemotherapy is working extremely well.

The tumor not only stops growing, it actually shrinks. “We were extremely lucky that Lisa responded so well to the therapy,” says Sascha. After 18 months and 72 sessions, the therapy comes to an end. The tumor is still in Lisa’s head, but remains the same size at best. He is “asleep” – as Sascha tells his daughter.

Today, Lisa leads an almost normal life. Because of the many meetings with nurses and doctors, she is very open to adults. She quickly takes visitors’ hands and says, “I want to sit next to you.” “She learned that during all the therapies,” says Sascha with a laugh.

Lisa proudly shows off her memories of her skiing holiday. “I’ve already won two medals,” she says, beaming all over her face. She likes the ski races more than the ski school. “I always have to drive so slowly there. Like a baby.”

Meanwhile, Lisa eats herself again. However, their sense of satiety does not work well. “We have to pay close attention to how much she eats,” says Sascha. “Sometimes she eats so much she throws up.”

Lisa currently has to get an MRI every four months. In this way it can be checked that the tumor does not grow again. The five year old doesn’t like going to the checkups because they are under general anesthesia and she has to have an empty stomach. “I’m always hungry in the morning,” she complains. “I don’t like going to the hospital,” says Lisa. “I’d rather stay at home or go to daycare and do nonsense.”

So far the steering has always been good. Lisa may never have to undergo chemotherapy again. But there is also a risk that the tumor will grow again. Around puberty, when hormone activity increases.

But Sascha remains confident: “The chemotherapy has worked before. If you have to do it again at some point, chances are it will work again.”

Sascha is now a member of the board of trustees of the Sunshine Foundation. “I want to give back and help other families with a child who has cancer,” he says. “We provide domestic help, organize events and provide financial support.”

“I look at life differently now. Work and all that is secondary to me,” says Sascha. He doesn’t look too far into the future, but looks at it from year to year. “I enjoy the time we have together.”

The optimism seems to have spread to the daughter. Once she says softly but firmly, “I’m not going to die.”

*The names have been changed by the editors because the family wants Lisa not to be found in a Google search later on.