{"id":12351,"date":"2024-05-06T15:50:43","date_gmt":"2024-05-06T13:50:43","guid":{"rendered":"https:\/\/kaks.hb-dev.de\/2024\/05\/06\/i-dont-want-to-lose-this-smile-a-mother-on-her-sons-rb-disease\/"},"modified":"2024-09-25T15:31:35","modified_gmt":"2024-09-25T13:31:35","slug":"i-dont-want-to-lose-this-smile-a-mother-on-her-sons-rb-disease","status":"publish","type":"post","link":"https:\/\/kinderaugenkrebsstiftung.de\/en\/i-dont-want-to-lose-this-smile-a-mother-on-her-sons-rb-disease\/","title":{"rendered":"“I don’t want to lose this smile” – a mother on her son’s RB disease"},"content":{"rendered":"\t\t
\n\t\t\t\t
\n\t\t\t\t\t
\n\t\t
\n\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t

Unique stories<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

\n\t\t\t\t
\n\t\t\t\t\t

“I don’t want to lose this smile” – a mother on her son’s RB disease<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t
\n\t\t\t
<\/div>\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
\n\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t
\n\t\t\t
<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\"\"\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t
\n\t\t\t
<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t

“Pick him up. And come here.”
\nThe ophthalmologist’s words on the phone are unmistakable.
\nSo she picks up her son at the daycare center.
\nTakes him to the ophthalmologist’s practice.
\nOn her advice, she immediately takes him to Erlangen University Hospital – and only an hour later learns what no mother in the world ever wants to hear: “Your son has cancer.”
\nAn hour ago, he was still playing outside in the nursery.
\nHow can he have cancer now?
\nRetinoblastoma!
\nShe’s never heard of it.
\nIt’s August 1, 2017.
\nCarolin will never forget that date.
\nIt is the day that changes her life – and especially that of her son Henry.
\nHard times lie ahead for the family.
\nUncertain times.
\nWith lots of questions.
\nAnd even more fears.
\nParents whose children have cancer understand and feel what Carolin feels.
\nEveryone else can be sympathetic, listen and help.
\nThey are not on an equal footing.
\nCarolin will also experience this in the coming months. <\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\"\"\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t
\n\t\t\t
<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t

SOMETHING Hilarious, SOMETHING BRIGHT IN HENRY’S EYE<\/strong>
KAKS wants to find out more about Carolin, Henry and the family.
\nHow did Henry’s diagnosis come about?
\nWhat were the signs?
\nWho discovered them?
\nWe arrange to have a long, confidential conversation.
\nWhich we write down.
\nFor Carolin.
\nFor Henry.
\nAnd for so many families whose children had “that damn cancer”.
\nOr have.
\nThis story is for them too.
\nIt should give them hope and the confidence that life after cancer and cancer treatment is possible.
\nJust a normal life.
\nAlthough there will always be life before and life after.
\nSo many parents of affected children make this division.
\nBecause the incision is there, digging deep into the souls of mothers and fathers.
\nSometimes it torments, sometimes it doesn’t.
\nBut it is always there.
\nEven for Carolin.
\nThat becomes clear in our conversation with her.
\nShe says so herself.
Carolin is a likeable woman.
\nWith a beautiful, warm voice, without a Franconian accent.
\nShe is 42 years old.
\nAn employee of a German airline.
\nMarried to Dirk, a professional musician.
\nThe couple live in Nuremberg and have two sons.
\nHenry, now four, and Nick, seven.
\n“Almost exactly a year ago,” Carolin says right at the beginning of the conversation, she saw something funny in Henry’s eye.
\nShe remembers a post on Facebook about abnormalities in the child’s eye.
\nAt first, it remained a faint memory.
\nBut when she sees “something bright” in her youngest son’s eye again barely a week later, she grabs her smartphone, takes a photo of Henry and sends it to her ophthalmologist friend.
\nShe gets in touch immediately: “Pick him up and come here.”
\nIt doesn’t take long before Carolin and Henry are sitting in her friend’s practice.
\nAnd it quickly becomes clear that there is no time to lose.
\nHenry is blind in his right eye.
\nThe retina of his eye is detached.
\nBlind?
\nDetachment of the retina?
\nCarolin’s head is buzzing with thoughts.
\nWhat does it all mean?
\nIt’s only six months since she was at this very practice with Henry.
\nA routine examination.
\nThere were no abnormalities.
\nHenry just gets his glasses here.
\nAnd now this.
\nThe doctors later tell the parents that this rapid development and change in a child’s eye is entirely possible.
The parents go to the university hospital in Erlangen.
\nThe doctors here don’t need an hour to tell Carolin and Dirk the following: Henry has a retinoblastoma.
\nA unilateral one. His right eye cannot be saved.
\nPlease don’t get your hopes up.
\nWe are no longer operating.
\nYou have to take the child to the University Hospital Essen in North Rhine-Westphalia. <\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t

I WANTED TO GET THE TUMOR OUT OF MY CHILD<\/strong>
Sentences like blows.
\nBut there is no time to feel them as hellish pain or as a terrible powerlessness.
\nIn the course of the conversation, Carolin will tell us about the problems that arose after Henry’s recovery.
\nVery openly.
\nBut she says of those first hours, days and weeks: “I worked well during the peak phase.”
So Carolin and Dirk drive to Essen with the child, who is still a happy boy.
\nThe doctors confirm the diagnosis.
\nThey undergo various examinations, including an MRI.
\nAnd set the date for the operation for a week later.
\nCarolin no longer knows how she got through the week at home until the operation
.
\nJust this much: “It was terrible. I just wanted to get this tumor out of my child.”
\nHenry laughs a lot this week as his parents wait for the appointment.
\nAnd he laughs, as they say, all over his face.
\nHe knows that he is ill and that the doctors will help him.
\nNothing more.
\nSo no reason not to laugh.
\nFor the little man.
\nFor his mother, this carefree attitude is everything: “I didn’t want to lose that laugh. I felt that my child’s life was at stake.”
\nThat’s why everything had to happen quickly.
\nQuickly.
\nQuickly.
\nShe really does repeat the word several times.
On Friday, August 11, 2017, the doctors in Essen removed Henry’s right eye in an operation lasting several hours.
\nAnd with it the tumor.
\nThe cancer that his mother wanted “out of her child”.
\nHenry receives neither chemotherapy nor radiotherapy after the operation.
\nJust two days later, on Sunday, the family travels back home.
\nFollow-up care takes place at different intervals; after six weeks, after three months, after five months.
\nSisters Carolin and Dirk show Henry how to apply cream to his eye socket in Essen.
\n“I can’t do that,” the mother complains at first.
\nPerhaps out of fear of hurting her child.
\nPerhaps out of shyness.
\nPerhaps out of excessive demands.
\n“But you can,” is the short answer.
\nThe family is not given any more advice. <\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t

PANIC FEAR FOR THE CHILDREN<\/strong>
Learning by doing!
\nThat’s the school.
\nAnd that’s the big challenge in the first few weeks after the operation.
\nThe so-called cup falls out of the three-year-old’s eye socket several times.
\nPutting it back in is anything but trivial, at least the first time.
\nHenry’s ophthalmologist Carolin gives instructions over the phone.
\nThe parents are not allowed to remove or insert the prosthetic eye for the first few weeks.
\nOnly the ophthalmologist is allowed to do this.
\nThis is Henry’s wish.
\n“Of course we tried to bribe him,” smiles Carolin.
\nEven the details come back to mind these days.
\n“Now that it’s the anniversary, it’s all coming back,” says Carolin quietly.
\nLike the same agonizing questions: Should I have noticed?
\nWhy didn’t I notice it?
\n“There was a phase when Henry started to hate me.”
\nA mother has to understand that first.
\nTo come to terms with it.
\nAnd resolve it.
\nCarolin finds help online and makes contact with a mother whose son is Henry’s age.
\nAmir had lost his eye to cancer two years earlier.
\nLittle Henry recognizes in the boy that he is not the only one “who has something like that”.
\nThat seems to do him good.
\nThe aggression towards his mother stops.
\nOf course, Carolin and Dirk want to bring up their sons and especially Henry “normally”.
\n“Sometimes I have to scold him,” says Carolin, “but I find it difficult.”
Henry’s brother Nick and the two cousins respond to Henry with great naturalness and Nick in particular with a lot of love.
\nBut even a seven-year-old reaches his limits – and has thoughts that would never occur to an adult.
\n“Henry has something special. And I don’t,” he once complains to Carolin.
\nWe tell Carolin about the workshops especially for siblings that the Children’s Eye Cancer Foundation now offers at its RB meetings.
\nAnd that many children and young people are taking part.
\nWho knows, maybe Nick will be sitting in one of these workshops at the next meeting, together with many other siblings who feel the same way as he does.
Carolin is certainly not doing well months after Henry’s operation.
\nShe suddenly develops an anxiety disorder.
\nWe like how openly and reflectively she talks about it: “The deep hole came. I was suddenly terrified for my children.”
\nShe goes to a day clinic.
\nEight weeks.
\nStarts behavioral therapy.
\nAnd comes back stronger.
\nTo the family.
\nTo her job at Nuremberg airport.
\nDirk has her back during the therapy.
\nHer sister is also a great support. Even friends of the couple, although there is also an attitude among some that the child’s operation is “over now” and “everything is fine again”.
It is also a relief for Carolin that she finds her way to the Children’s Eye Cancer Foundation.
\nThere are answers here.
\nLike-minded people.
\nUnderstanders.
\nEncouragers.
\nWe laugh a lot when she tells us how she got in touch with the foundation: “My brother-in-law’s friend has a girlfriend and she is the sister of a friend ….”
\nThe contact is now there and that is good.
Henry goes back to his nursery shortly after the operation.
\n“The teachers there are great,” says Carolin.
\nThey couldn’t wish for better ones.
\nThey both visit an institute for the blind and visually impaired in the city and get all the information they need.
\nFor Henry.
\nAccording to Carolin, he is a completely normal, bright boy.
\nEven at nursery.
\nHowever, Carolin can also see that her younger son is anxious about new things.
\n“He gets scared very quickly,” she says.
\nHe doesn’t like gymnastics and only plays soccer at home. <\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t

THE FEAR OF THE BAD WORD CANCER<\/strong>
Sylt – comes at just the right time.
\n“Not too early, not too late,” says Carolin.
\n“Sylt was great.”
\nThe family went to the North Sea for rehab in April this year.
\nIt’s good for all four of them.
\nIt goes deep.
\nAt least for Carolin.
\nHere she learns to put aside her fear “of the bad word cancer”.
\nShe only says the word during our hour-long conversation.
\nShe is probably not aware of it.
\nBefore Carolin and Dirk go to Sylt, they have to tell their boys the whole truth.
\nBecause so far, Nick and Henry only know that Henry was ill and had to have an operation in Essen.
\nCancer – they haven’t told the children that.
\nBut now they have to.
\nNick is terrified.
\nHe knows that his grandmother died of cancer.
\nDoes Henry have to die now too?
\nCarolin and Dirk are able to allay the boys’ fears, which have been with them for months.
\nNot everyone dies of cancer.
\nThey hold on to that.
\nSo Sylt can come.
\nAnd the time in the clinic, by the sea – it will be a success.
\nPerhaps the word is strange in this context.
\nBut we listen to Carolin rave about the families they meet.
\nAbout the friendships they make.
\nAbout the good conversations they have with other parents of children with cancer – some of them still undergoing treatment.
\nOf the outings.
\nAnd of the women’s and men’s evenings, which are so wonderfully free of illness and fear.
\nAnd of her husband’s guitar playing on the beach on Sylt.
Dirk, says Carolin, has not yet processed the terrible time in his music.
\nAs you might imagine a professional musician would.
\nBut her husband has had good, personal men’s talks with the other fathers on Sylt.
\nShe knows that.
\n“It was also something special for the men.”
\nEveryone in the family still draws on this experience.
\nDirk, Carolin, Nick and Henry.
\nThe parents have the next RB meeting in D\u00fcsseldorf as a fixed date in their calendar.
\nThey are looking forward to the meeting, the encounter with the other families and the encouragers from our foundation.
“It doesn’t always have to mean the worst,” says Carolin.
\nLooking back on the past twelve months.
\nAnd to that day when the ophthalmologist tells her: “Pick him up. And come here.”
\nThe sentence is set in stone.
\nAnd it triggers an experience that terrifies the family.
\nBut it also makes them stronger.
\nCarolin and Dirk’s relationship has become closer.
\nThey both know that this year is part of our lives.
\nAnd even if they never imagined it, it’s good the way it is today.
\nAnd when they hear from Essen that Henry’s illness is not genetic, it takes a load off their minds. <\/p>\n

The interview was conducted by Sabine Kuenzel for KAKS.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\"\"\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t
\n\t\t\t
<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t
\n\t\t\t
<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t
\n\n\t\t\t\t\t\t
\n\t\t\t\t\n\t\t\t\t<\/path><\/svg>\t\t\t\t<\/a>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t
\n\n\t\t\t\t\t\t\t\t\t

\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":"

“Pick him up. And come here.”
\nThe ophthalmologist’s words <\/p>\n","protected":false},"author":1,"featured_media":6487,"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-12351","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\/12351","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=12351"}],"version-history":[{"count":0,"href":"https:\/\/kinderaugenkrebsstiftung.de\/en\/wp-json\/wp\/v2\/posts\/12351\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/kinderaugenkrebsstiftung.de\/en\/wp-json\/wp\/v2\/media\/6487"}],"wp:attachment":[{"href":"https:\/\/kinderaugenkrebsstiftung.de\/en\/wp-json\/wp\/v2\/media?parent=12351"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/kinderaugenkrebsstiftung.de\/en\/wp-json\/wp\/v2\/categories?post=12351"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/kinderaugenkrebsstiftung.de\/en\/wp-json\/wp\/v2\/tags?post=12351"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}