“Do you see her eyes go up and down?” asks Glenn. He looks at his three-month-old daughter Roxy and brings his head closer to hers. “That’s what it betrayed. It hurts so much. She has been through more medically than I have in her short life.”
On April 27, 2022, Glenn and his fiancée Shanice will become father and mother for the first time. “The delivery was very difficult,” says Shanice. Her three-month-old daughter is sleeping on her lap. “Roxy had pooped in the amniotic fluid. This made it difficult for her to breathe. At half past one in the morning she was fetched with a vacuum pump.”
Something goes wrong during the vacuum extraction. “Her heart rate dropped rapidly to just 25 beats per minute. I was cut in no time. The pediatrician immediately took Roxy for a heart massage, ventilator and a tube. There I lay. With 32 stitches, without my child.”
“We really had to recover from that,” Glenn’s partner agrees. He puts his hand lovingly on her arm. “When we got home, Roxy didn’t drink very well. We called the health clinic, but they said it’s part of it.” Two months later it is time for a weighing moment. “Roxy had lost 30 grams, when babies are supposed to gain weight.”
Advice: different bottle feeding. “The new bottles did not catch on. So we called again and were sent to the GP. He didn’t know what was going on either, so we insisted on a hospital visit. Roxy was admitted to the Red Cross Hospital on June 28 due to nutritional problems,” says Shanice.
Hospital
“Shanice was allowed to stay overnight in the burn unit. It was a small room, very gray and drab. She slept on a pull-out bed with a rubber mat. I could get really angry about that,” says Glenn. “You saw us going backwards by the hour, but I had to and would stay with Roxy,” adds Shanice.
Four days later, the couple is still in the hospital. “That Saturday a very sweet nurse came by. “Do you see that with her eyes?” she asked us. I immediately thought: ‘something is wrong here’, so I asked if a doctor could look at it. It was the weekend, so there was no doctor present,” says Glenn. “Then we called the AMC Hospital in Amsterdam.”
The young family can go there immediately. “I immediately started crying,” says Shanice. “Finally color in the room and a view out the window. I knew: ‘I’m in the right place here’. That afternoon, five doctors came.” Glenn: “That was more than I had seen in Beverwijk in all those days.”
pink bunny
Glenn has a bad feeling at that moment. “Shanice thought that Roxy was malnourished and that her eyes were shaking because she woke up hyper. My gut said something completely different. I thought it was a tumor.”
In the hospital, the doctor decides to have an MRI scan. “That was terrible,” sighs Shanice. “I was allowed to sit with her, but I had to pee if necessary. I really couldn’t take it anymore, so I quickly went to the toilet. When I came back I wasn’t allowed in anymore.”
Roxy is very upset. “I heard her screaming so loud on the other side of the wall. That’s when you’re really capable of kicking in the door,” says Shanice. Then she can go in. “Roxy was all red and covered in vomit. I comforted her with a pink bunny. If I had been there from day one, she wouldn’t have cried like that. This experience really hit me.”
Thunder rays
Shortly after the scan, Glenn runs into a doctor. “I have expressed my suspicions about the brain tumor. The doctor indicated that she was not allowed to say anything yet and would come back to it tomorrow. Ten minutes later she entered our room. Then I knew: wrong thing.”
Glenn puts on a concerned face. “I immediately called out: ‘What is it, is it bad?’ The answer was ‘yes’.” He bounces off the couch as if that same doctor is now standing in his living room. “I asked if it was a brain tumor. The answer to that too was ‘yes’. It’s about the size of a kiwi. Shanice dropped to her knees, I started screaming. You’re stepping into hell with one foot.”
Shanice and Glenn look at each other. “Are you OK?” she asks. “Yes,” he replies. “My tears are finished.” Shanice turns her gaze to Roxy. A tear rolls down her cheek. “I try to enjoy the little moments with my daughter, but since the diagnosis I’m on a pink cloud with a lot of black thunder rays.”
whopper necklace
A day after the diagnosis, Roxy is admitted to the Princess Máxima Center for pediatric oncology in Utrecht. “I didn’t even know childhood cancer existed. In this hospital, everything becomes very real. You see bald-headed children of all ages,” says Shanice. She carefully wipes a tear from her face with her sleeve.
The Princess Máxima Center is both a relief and a major nightmare for the family. Glenn: “The hospital looks nice from the outside, but inside it’s all misery. Especially to see so many sick children. Some have great chains from Beverwijk to Utrecht and back. Heartbreaking. But somehow you also get used to the blows you get in such a hospital. We are pleased to be involved at such an early stage.”
At eight weeks, Roxy is the youngest patient ever with this diagnosis. Shanice: “It is a very rare tumor called Chiasma Hypothalamus Glioma. There are forty children a year in whom this tumor is found. It pushes the brain up and causes hydrocephalus or bulging eyes, that’s what most people find out.”
Chemo
Because she is so young, radiation is not an option yet. “Then there’s one thing left, and that’s chemo,” explains Glenn. “She now gets a course once a week and two courses every three weeks. Roxy will never get rid of the tumor, so the question is whether it will stay the same or get smaller. They may be able to cut something out in the future, but there are veins and nerves running through the center of the tumor. To cut out means to bleed to death or become completely blind. It’s a slow-growing, benign tumor in the wrong place.”
An MRI scan will show in three months what the treatment plan will look like. “We feel very powerless. The prospect is now that she will be five years old. The chance that she will become severely visually impaired is eighty to ninety percent,” says Shanice.
“I’ve thought a lot about that. Now she still sees. When she sees us she is completely folded. You want to show your child the world and that is not possible”, Glenn continues. “Now I think: better deaf than dead. When you hear that your child is going blind without having cancer, that is also intense. But now you’d rather have this than dead.”
Donations
Shanice and Glenn say they will try to get the tumor out of Roxy’s head. “We are in contact with two hospitals in the United States and are looking at the possibilities surrounding immunotherapy. That is not reimbursed and is terribly expensive. My mother has started a fundraiser for us that has already received many donations.”
More than 1400 donations, including from singers Anouk and Thabita. Glenn: “It’s really bizarre how people sympathize with us. Money is important and we are very grateful for that, but we get prayers, cards and support from the strangest quarters. That really keeps us going. I would never in my life know how to thank these people.”
fundraiser
Roxy’s situation can be followed via the online fundraiser at gofundme.com. Jeunesse Baart, Glenn’s mother, regularly posts an update on how her granddaughter is doing. There is also an opportunity to donate and leave words of support.