Ghislain (3) survives aggressive cancer, now his grateful father sells art for a good cause: “One in three chances that he would make it… We were very lucky”

“Together with Ghislain, two other children started their treatment against a very aggressive cancer. One is dead, the other has relapsed.” Out of gratitude that his son (3) made it after all, his father Gerald Deweer from Otegem is organizing an exhibition and art sale in his gallery. A large part of the profit goes to the Cancer Foundation. “The pediatric cancer ward … that silences you.”

Ghislain was barely 1 year old when the disaster occurred. “One day we got him out of his bed and he was completely stiff,” says his father Gerald Deweer from Otegem near Zwevegem. “Ghislain had never had any real health problems until then, so it took the doctors a while to figure out what was wrong with him. After a few days, the verdict came: he had a neuroblastoma, a tumor that occurs almost exclusively in children.”

Ghislain’s neuroblastoma was on his adrenal gland. “Although no one had noticed, the tumor had meanwhile grown to the size of an orange. He pressed on all his nerves, which had made Ghislain so immobile that morning.”

Mark Deweer – Gerald’s father and Ghislain’s grandfather, also founder of the gallery – died recently after a battle with lung cancer. “When he got to the so-called ‘stage four’, there was nothing more to do, we remembered. So it came as a slap in the face when we heard at the diagnosis that Ghislain’s cancer had really spread and he had also reached the same ‘stage four’. The younger the patient, the greater the chance that you can still reverse the worst-case scenario, luckily. Our boy had a 30% chance of making it.”

Months in isolation room

A grueling treatment followed. “He has received and gone through pretty much everything available to fight cancer: chemo, surgery, radiation… For immunotherapy, where your body is basically reset to attack the cancer cells itself, his immune system was completely destroyed , which means he could spend months on end. had to stay in an isolation room.”

The family dragged themselves through the year and a half as best they could. “We, who are normally so organized and plan everything meticulously, suddenly had to let it all go. We lived from day to day, depending on how good or bad Ghislain was that day. Between Christmas and New Year 2020, Ghislain had to go to hospital to have the tumor surgically removed. They had prepared us: ‘You can count on being here on New Year’s Eve’. But look, Ghislain made a wonderful recovery and they let us celebrate New Year’s Eve at home with the family. We had a great night then.”

Five years

Meanwhile, Ghislain has already completed his treatment for six months. “This 30% chance of survival was not an exaggeration. Along with Ghislain, two other children started their treatment at the same time. One has passed away, the other has relapsed and is still undergoing intensive treatment. So we have been very lucky . We can only say that Ghislain will be cancer-free within five years. But he’s going to the hospital right now for a check-up, so it’s looking good. We consider ourselves extremely lucky that he survived this.”

Gerald brought in the designer Demeyer to display the artworks in an attractive way. © JM

Out of gratitude, Ghislain’s parents want to do something for two charities committed to fighting cancer. This weekend Gerald opens the exhibition ‘The Arts of Fearless Living’ in his art gallery Deweer in Otegem. Together with the designer Jean-Philippe Demeyer, he selected 361 works of art from their collection. Demeyer converted part of the gallery into a Roman villa to display the artworks.

“We are extremely satisfied with the result. In our gallery we normally work with sterile walls to hang artworks on. ‘Art must speak for itself’ is our motto. But we are pleasantly surprised by what Jean-Philippe’s interior, where he also uses some furniture that he has made himself, can with works of art.”

The opening is on Sundays, then you can visit it every Thursday, Friday and Sunday from 14-18. The artworks are of course also for sale. “We donate up to half of the sale price to the Anticancer Foundation and to My Cancer Navigator. This first organization raises funds for scientific research into cancer. One of the ongoing projects is scientific research into neuroblastomas. So it is precisely the cancer that our son had to fight against, and in which – due to the limited number of cases – not much is invested in from the pharmaceutical sector.”

“When we heard that, we realized: we can hardly do anything but put our shoulders to the wheel. No parent should go through what happened to us. That feeling when five professors are sitting at the table across from you and telling you that your child has only a slim chance of getting through… Your world really does collapse in that moment. When you enter the pediatric cancer ward and see how many children are so seriously ill. It really quiets you down.”

‘different opinion’

The Deweer family themselves have had a very positive experience with My Cancer Navigator. “That organization has a database of the best oncologists and cancer specialists in the whole world. For any type of cancer, they can tell you where to find the most reputable doctors in the field. They will then put you in touch with them so that you can ask them for a ‘second opinion’. They can tell you whether they will treat your type of cancer in the same way, e.g. Our country has very good doctors, but it is always possible that in other places in the world they are a little further when it comes to knowledge about a specific cancer.”

“These were very valuable conversations for us. The doctors confirmed to us that the approach suggested by UZ Gent was also the one they would use themselves. When we heard that Ghislain only had a 30% chance of overcoming this , we told ourselves that we would never feel like we hadn’t done everything we could to give him the best chance for success. The confirmation that our treatment was the best we could choose gave us peace of mind .” (JM)

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