{"id":6550,"date":"2023-04-08T08:52:00","date_gmt":"2023-04-08T06:52:00","guid":{"rendered":"https:\/\/ver-ooginoog.nl\/bibliotheek\/my-son-has-retinoblastoma\/"},"modified":"2026-09-15T17:13:22","modified_gmt":"2026-09-15T15:13:22","slug":"my-son-has-retinoblastoma","status":"publish","type":"library_pt","link":"https:\/\/ver-ooginoog.nl\/en\/library\/personal-stories\/my-son-has-retinoblastoma\/","title":{"rendered":"My son has retinoblastoma"},"content":{"rendered":"<div class=\"wp-block-post-date\"><time datetime=\"2023-04-08T08:52:00+02:00\">08 April 2023<\/time><\/div>\n<h2 class=\"wp-block-heading\">Perseverance<\/h2>\n<p class=\"wp-block-paragraph\">My oldest son, Dani, has the hereditary form of <a href=\"https:\/\/ver-ooginoog.nl\/en\/retinoblastoma\/\" data-type=\"page\" data-id=\"610\">retinoblastoma<\/a>. We discovered this ourselves when he was eight months old and his eye would occasionally turn slightly outward. Nothing had ever been noticed at the well-baby clinic, and even the family doctor just shrugged it off. Still, something inside me told me we had to keep pushing. I wanted to know what was wrong with that eye. Then we were referred to the hospital in Amersfoort. Because it\u2019s such a rare condition, a completely different diagnosis was made in Amersfoort, and we were referred to Utrecht. After a long morning of tests and waiting, the diagnosis came: retinoblastoma (retinal cancer) in both eyes. Phew. That\u2019s when your world comes crashing down.         <\/p>\n<p class=\"wp-block-paragraph\">Looking back now, we ourselves\u2014in our twenties at the time\u2014were still just kids. Yet you\u2019re expected to grow up overnight. Less than a week later, Dani\u2019s right eye was removed; it was too damaged to be saved. For his left eye, they tried administering chemotherapy intra-arterially twice, but it didn\u2019t work. After that, we were referred to the hospital in Essen (Germany), where we stayed as a family for an extended period for 25 radiation treatments. It was an intense treatment, but it achieved the desired result.     <\/p>\n<h2 class=\"wp-block-heading\">A lot of help and support<\/h2>\n<p class=\"wp-block-paragraph\">We\u2019ve found that it\u2019s quite a lonely struggle, despite the enormous outpouring of help and support. Retinoblastoma\u2014and the entire treatment process\u2014is still virtually unknown. That\u2019s why we joined the Retinoblastoma Association fairly early on. It was\u2014and still is\u2014a truly invaluable resource for us. Especially the <a href=\"https:\/\/ver-ooginoog.nl\/en\/what-we-do\/meetings\/\" data-type=\"page\" data-id=\"1131\">patient day<\/a>, when we were still in the middle of treatments. But even now that we\u2019ve returned to our normal lives, it really feels like coming home.     <\/p>\n<p class=\"wp-block-paragraph\">At the hospital in Germany, things were still pretty old-fashioned, and they really scared us about the future for a child with retinoblastoma\u2014like being bullied. But nothing could have been further from the truth. Dani is incredibly open about his artificial eye, isn\u2019t ashamed of anything, loves soccer and is an amazing goalkeeper, enjoys biking and swimming, and has lots of friends.  <\/p>\n<h2 class=\"wp-block-heading\">Trust<\/h2>\n<p class=\"wp-block-paragraph\">We also always made a special occasion out of our visits to the VUmc. After all those times under anesthesia, we\u2019d always stop by the hospital restaurant for a meal, and he was often allowed to pick out a little gift. Regular visits to Kinderstad and the amazing members of the retinoblastoma team have made sure that we always look forward to follow-up appointments. And although you can never be completely carefree again\u2014and there\u2019s always that lingering fear of secondary tumors\u2014those wonderful experiences give us a lot of confidence for the future.   <\/p>\n<p class=\"wp-block-paragraph\">As I said, I\u2019ll never be completely carefree again, but we actually lead a very normal and happy life. Dani has a prosthetic eye, and his vision in the other eye isn\u2019t perfect either, but it doesn\u2019t hold him back in any way. He can do everything his peers can do.  <\/p>\n<p class=\"wp-block-paragraph\">He does fall and bump into things a bit more often, though. Sometimes that makes him sad, too. \u201cI\u2019d love to know what it\u2019s like to be able to see with both eyes.\u201d As parents, that can sometimes take us by surprise and make us sad, because of course we want that for him. But if we look at it realistically, he really isn\u2019t missing out on anything, and he\u2019s just like any other child\u2014only a little bit extra special because of the beautiful way he deals with his \u201cdisability.\u201d     <\/p>\n<h2 class=\"wp-block-heading\">My Tips<\/h2>\n<p class=\"wp-block-paragraph\">For families just starting out, I have the following tips:<\/p>\n<ul class=\"wp-block-list\">\n<li>Focus on your little one and your family. Don\u2019t worry about what society says you\u2019re supposed to do\u2014just choose what\u2019s best for you. For example, I started a blog* so I wouldn\u2019t have to repeat the same story a hundred times. That gave us some peace of mind.   <\/li>\n<li>Stay in control. For example, one day we walked out of the hospital because Dani had been waiting too long for surgery without having eaten or drunk anything. <\/li>\n<li>Stick to your regular routine and structure. For example, we weren\u2019t allowed to sleep together with Dani at the hospital. So we always called each other in the evening, and the parent who didn\u2019t stay overnight would make a nice cup of coffee in the morning and bring it to the hospital in a thermos.  <\/li>\n<li>Keep looking for little moments of happiness. A new bead on the &#8220;Kanjer&#8221; necklace, a card, that first smile after the eye patch was removed, a nice cup of coffee: those are the things that keep you going. <\/li>\n<li>And finally: Always trust your mother&#8217;s and father&#8217;s instincts*Editor&#8217;s note: This blog no longer exists.<\/li>\n<\/ul>\n","protected":false},"excerpt":{"rendered":"<p>My name is Carola; I\u2019m happily married to Dinant (we\u2019re both 36), and I\u2019m the mother of Dani, who is 9, and Zavi, who is 5. My practice is my passion. I coach women to heal their relationship with food and with themselves. In addition, I\u2019m active on social media, where I share a lot of personal content alongside my professional posts. I share a lot about our personal lives there: the ups and downs. I love nature and enjoy hiking (with my family, friends, or on my own); I read a lot and am committed to personal development.     <\/p>\n","protected":false},"featured_media":6480,"template":"","meta":{"_acf_changed":false,"_daextauttol_enable_tooltips":""},"library_cat":[113],"class_list":["post-6550","library_pt","type-library_pt","status-publish","has-post-thumbnail","hentry","library_cat-personal-stories"],"acf":[],"_links":{"self":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/library_pt\/6550","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/library_pt"}],"about":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/types\/library_pt"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/media\/6480"}],"wp:attachment":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/media?parent=6550"}],"wp:term":[{"taxonomy":"library_cat","embeddable":true,"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/library_cat?post=6550"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}