{"id":12339,"date":"2024-05-06T13:50:17","date_gmt":"2024-05-06T11:50:17","guid":{"rendered":"https:\/\/kaks.hb-dev.de\/2024\/05\/06\/till-the-little-fighter\/"},"modified":"2024-09-25T15:31:34","modified_gmt":"2024-09-25T13:31:34","slug":"till-the-little-fighter","status":"publish","type":"post","link":"https:\/\/kinderaugenkrebsstiftung.de\/en\/till-the-little-fighter\/","title":{"rendered":"Till, the little fighter"},"content":{"rendered":"\t\t
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Till, the little fighter<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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\n\t\t\t\t\t\t\t\t\t“My child is my role model!”\nThat’s what Sandra says about her Till today.\nIt was almost a year ago when Till was diagnosed with bilateral retinoblastoma.\nA disease the family had never heard of before.\nSince the diagnosis, Till and his parents have had to go through a lot.\nKAKS would like to thank Till and his mother for this report, which will certainly help and encourage many families who are affected themselves.\nWe wish you all the best for the future! \t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Our son Till, who was just under two years old at the time, was always a happy little guy.
\nCheeky, outgoing, fit as a fiddle and developing like any other child.
\nThen, every now and then in March 2014, I saw a strange glimmer or reflection (comparable to a cat’s eye) in his right eye.
\nI didn’t think much of it, what could be wrong with it?
\nThen there must be something somewhere in the apartment that was reflected in his eye. <\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\n\t\t\t\t\t\t\t\t\tBut it became more and more frequent and this “phenomenon” also occurred outside our apartment.\nIt started to make me wonder.\nWhat was it?\nI asked other people if they could see it too and at first they denied it.\nWhen they saw it too (I didn’t stop there either as I’d never seen it before and just couldn’t explain it to myself) I had a really bad feeling.\nMy partner looked it up on Google and the first entry under the search term “cat’s eye” was for retinoblastoma!\nAnd we already had this hunch, especially after exposing his eyes to a veritable storm of flashbulbs.\nThe glowing pupil on the right was also visible in photos, as well as a constant gray haze without the flash. \t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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So the next day we went straight to the pediatrician and after a quick look at his eyes, he sent us to an ophthalmologist just around the corner. There we were told that Till was already blind in his right eye and that his left eye was also affected. It was most likely retinoblastoma and our world fell apart! Shocked, he sent us to the eye clinic in Kassel on the same day where he was examined again. Unfortunately, they came to the same conclusion. After an anesthetic examination two days later, Till was sent to the eye clinic in Essen. The specialists were there. What followed was a veritable diagnosis frenzy. It is difficult for us to reconstruct this time because, shocked as we were, we were unable to grasp much of the information. Besides questions like: Why my child? Will it survive? What will happen to our family? Will he still be able to see, etc. We struggled to keep up with everything. Everything happened so incredibly fast. He had to be put under anesthesia almost every day for the first week. Eye checks, MRIs, lumbar and bone marrow punctures and finally, unfortunately, the enucleation (removal) of his right eye less than four days after we arrived in Essen.)After that, there was no consensus on how to proceed. The form of therapy changed almost daily: chemotherapy or radiation, there was no consensus because the tumor was already thought to be in the optic nerve. In the end, the histology of the right eye revealed that this was not the case after all, and after about a week they agreed on chemotherapy. He was to be given 6 blocks of chemotherapy, with a “break” of just under three weeks between each block.I had great difficulty with the removal of my right eye. No, not directly with the removal, but with the suffering of my child. I couldn’t look at what “they” had done for almost three weeks. I couldn’t look at my child, not without an eye patch. In the end, our ocularist (ocular prosthetist) helped me to face it and from then on it got better every day. I changed Till’s prosthesis and cleaned his eyes. I literally grew into it, especially as my child showed me that he had no problems with it himself and played as well as ever.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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So one chemotherapy block followed the next. We almost always had an extra stay in hospital between the blocks because Till’s values slipped lower and lower and were difficult to get back up again. The slightest infection caused him to run a high fever. He was no longer eating properly and was about to have a feeding tube. He no longer had any hair, was pale and had become visibly thin. But he laughed every day. He never lost his smile! Our life went on, albeit very isolated and therefore very restricted, but it went on. With two other toddlers, you have no choice but to carry on. My daughter Marlene (just 8 weeks old at the time) and big brother Leonhart (4 years old) were still there and wouldn’t let us let go. So it HAD to go on! We came to terms with the situation and tried to offer the children a good life, just like before the diagnosis. <\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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As I said, one block followed the next.
\nUnfortunately, towards the 4th block a recurrence (tumor that had grown back) was discovered, which was then treated with thermochemotherapy from then until the 6th block.
\nTill was given cryotherapy (icing) and then for the 6th block after another recurrence, this time in the vitreous body, two Melphalan injections (intravitreal Melphalan therapy).<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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The tumors visibly calcified and everything finally seemed to be coming to an end. Till’s hair was growing again, his values were rising and we were so full of hope that we had finally escaped all this crap. As a precaution, however, the check-up interval was set at two weeks. This meant going to Essen every two weeks for an examination under anesthetic. That didn’t suit us at all, as we wanted to finally get some peace and quiet. But of course safety comes first for us (especially for us!!!!) and so we went there every two weeks. <\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\n\t\t\t\t\t\t\t\t\tThe next blow came at the beginning of December: a recurrence on an old tumor scar.\nAfter icing, the tumor gave up!\nUnfortunately, the next bad news came two weeks later: new vitreous seeding.\nThis was followed by melphalan therapy again, but this time three injections in succession at intervals of 7-10 days. \t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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ince we had the last injection yesterday (as of today: 17.01.2015), we are of course only partially aware of the success.
\nSo far, however, the vitreous humor is on the retreat.
\nYou also have to be aware during the whole treatment that the children can get new tumors as long as the retina is not yet mature.
\nStatistically speaking, children over the age of three hardly get any new tumors, but that is “just” a statistic.
\nIt is important that the tumors are caught quickly and brought under control.
\nSmall tumors can be treated quite well with local measures (cryo, laser, injection), so it is important to catch them early enough!
\nAt some point, most of them are under control and the children are recurrence-free… Sometimes it takes a little longer, but long-term success is important! <\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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You learn a lot during this time, you stop comparing your child with other retinoblastoma children, you go your own way, find your own way to cope with the shock and the fate. <\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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In the end, Till showed me my way!
\nHe is so incredibly strong despite his two years, even though he has had to go through so much… My child is my role model!!! <\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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You can continue to follow Till’s story on Facebook: https:\/\/www.facebook.com\/Retinoblastom?fref=ts<\/a><\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\n\t\t\t\t\t\t\n\t\t\t\t\t\t\tBack\t\t\t\t\t\t<\/a>\n\t\t\t\t\t<\/h3>\n\t\t\t\t\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"

“My child is my role model!”
\nThat’s what Sandra says about her Till today.
\nIt was almost a year ago when Till was diagnosed with bilateral retinoblastoma <\/p>\n","protected":false},"author":1,"featured_media":9126,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"uix_meta_title":"","uix_meta_description":"","uix_canonical_url":"","footnotes":""},"categories":[87],"tags":[],"class_list":["post-12339","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-unique-stories"],"_links":{"self":[{"href":"https:\/\/kinderaugenkrebsstiftung.de\/en\/wp-json\/wp\/v2\/posts\/12339","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/kinderaugenkrebsstiftung.de\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/kinderaugenkrebsstiftung.de\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/kinderaugenkrebsstiftung.de\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/kinderaugenkrebsstiftung.de\/en\/wp-json\/wp\/v2\/comments?post=12339"}],"version-history":[{"count":0,"href":"https:\/\/kinderaugenkrebsstiftung.de\/en\/wp-json\/wp\/v2\/posts\/12339\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/kinderaugenkrebsstiftung.de\/en\/wp-json\/wp\/v2\/media\/9126"}],"wp:attachment":[{"href":"https:\/\/kinderaugenkrebsstiftung.de\/en\/wp-json\/wp\/v2\/media?parent=12339"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/kinderaugenkrebsstiftung.de\/en\/wp-json\/wp\/v2\/categories?post=12339"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/kinderaugenkrebsstiftung.de\/en\/wp-json\/wp\/v2\/tags?post=12339"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}