I, Jan Burger, father of Milan (7), a former retinoblastoma patient, spent the day with my family and am writing this report.<\/p>\n
The Retinoblastoma Working Group\u2014composed of Edwin van Miltenburg, Wannes van der Veer, Klasiena Soepboer, Hanneke van de Ven, and Linda de Groot\u2014had a jam-packed program in store for us. For the adults, the Amstelzaal at VUmc was where it all took place. The children, accompanied by a group of fantastic volunteers, were let loose in Kinderstad, the hospital\u2019s so-called \u201cescape room.\u201d <\/p>\n
In the Amstelzaal, Prof. Dr. Annette Moll kicked off the event. She began by welcoming the Retinoblastoma Team from Amsterdam UMC. Most of the sixteen brilliant minds were in attendance, including Annelies Frankfoorder, a retired nurse who remains deeply committed to \u201cher\u201d little ones. Edwin van Miltenburg then took over. Edwin is the president of the Retinoblastoma Association of the Netherlands and, for the past six months, has also been a board member of the OOG in OOG Association. His remarks captured the central theme of the morning. He quoted \u201cGrandpa\u201d Willem Kind, who passed away in 2018 at the age of 92 and was the very first member of the Retinoblastoma Association: \u201cDon\u2019t let retinoblastoma rule your life\u2014make it a part of it. You can live past 90 with it, but you\u2019ll go through a lot along the way.\u201d A piece of wisdom that is widely shared, as became clear this morning. <\/p>\n
Her very first source of inspiration was blind influencer Tjarda Struik, a woman who, despite her visual impairment (5% vision), makes the most of her life. In her ambition to live as normally as possible, she has established herself on social media as a role model for the blind and visually impaired. She raises awareness for this demographic, and she does so with a touch of humor. When asked what she does all day, she casually replies, \u201cI wave my kids off and then spend the rest of the day lying in bed.\u201d The opposite is true. She now runs her own business and is also active in politics. She had a clear message for the parents in attendance: don\u2019t be afraid to be strict with your child. \u201cI hated it at the time, but I\u2019m eternally grateful to my parents for this approach. It made me resilient from the moment I opened the front door and stepped out into the harsh world.\u201d <\/p>\n
And she has certainly had to learn firsthand that the world can be a harsh place. \u201cBeing different makes you vulnerable. People stop seeing anything else and take advantage of your disability when it suits them.\u201d Yet she has never denied who she is. \u201cI am who I am, despite and because of my visual impairment.\u201d <\/p>\n
Next, director Eline van Diggelen took the stage. Some time ago, Eline was inspired by the stories of ocularist (artificial eye maker) Jelmer Remmers, who lives in her neighborhood. She soon came up with the idea for a film, and on this day we were treated to a sneak preview. The result is impressive. The film beautifully depicts how Jelmer and his team help a young girl receive a new prosthesis. The entire treatment process is captured up close. These images are accompanied by an intimate portrait of five people who open their eyes in front of the camera and see their new prostheses for the first time. The reactions are deeply emotional and demonstrate what the prostheses mean for their self-confidence. \u201cNow I can just be normal\u201d is one of the most telling reactions, followed by tears of joy. A beautiful portrayal of the human value behind the profession of an ocularist. <\/p>\n
Next up was Femke Olsman, 21 years old and a former patient with unilateral retinoblastoma. Her presentation was aptly titled \u201cGood Times, Bad Times.\u201d Femke took us through the different phases of her life, from her treatment to the present. In doing so, she revealed her most vulnerable side: she struggled with depression for a long time while attending vocational school. She has since earned her driver\u2019s license, is now a doctor\u2019s assistant, and is getting married next year. It\u2019s incredibly impressive that a 21-year-old can share her story like this. Her father also spoke and shared some fun anecdotes about a headstrong but very independent daughter. The family had to endure a difficult period, but as her father so beautifully put it: \u201cWithout valleys, there are no mountains.\u201d <\/p>\n
Next up was Sanne Hofman (bilateral retinoblastoma). Sanne is a former Paralympic swimmer (2016 in Rio de Janeiro). Her story is one of battling skepticism. Her belief in her own abilities was essential to winning this battle. While competing, she faced her limitations every day: from her coach\u2019s lack of understanding to the exhaustion of striving to be the best despite everything. It was no different as a student. Before her introductory meeting for her new program, she was told she couldn\u2019t do it. After that meeting, she earned their trust and more than proved them wrong. Because, as she herself says: \u201cBy constantly having to convince others, I show that anything is possible.\u201d <\/p>\n
The morning concluded with a presentation by Mieke Ouwendijk, a psychologist at Amsterdam UMC. She is about to launch a study on quality of life as young people transition into adulthood: what social and psychological challenges do they face, and how do they cope with them? In the spring of 2023, she will ask parents and children to help answer this important question. <\/p>\n
Meanwhile, the teenagers attended a TikTok workshop with Tjarda Struik, and in the so-called \u201csquare,\u201d there was time for questions for the medical specialists, the OOG in OOG association, getting to know one another, and a nice lunch.<\/p>\n
While the adults listened intently to the presentations, the children had the time of their
lives in Kinderstad. This space is filled with games, ranging from a soccer field to a racing game, from a checkerboard to a foosball table. And as if that weren\u2019t enough, there was a theater performance, and plenty of photos were taken in the \u201cphoto booth.\u201d After the adults joined the children following a delicious lunch, another surprise was pulled out of a hat: a real magician. With the look of amazement still on the spectators\u2019 faces, the day concluded with a real mini-disco called \u201cThe Musical.\u201d <\/p>\n
I look back on a wonderful day. Milan summed it up best: \u201cI\u2019d like to stay, Dad.\u201d And to think, this was in a hospital where he\u2019d lived through his worst nightmares. Grandpa Willem would have been proud! <\/p>\n