RB: Gemeinsam
stark als Familie!
Your child, your nephew, your niece, a little friend, a little girlfriend has been diagnosed with retinoblastoma. Cancer. How can that be? Why? You are shocked, scared, sad. The road ahead is difficult, but because so many of us have already walked this path, we would like to tell you that there is plenty of reason for hope and confidence. 95% of children with retinoblastoma survive in Germany. The most modern treatment methods are available to children here. The diagnosis is usually made in good time.
We offer many support options and are there for you!
Together we are many
We know how alone you can feel. Anyone who is confronted with a cancer diagnosis for their own child needs people who understand them. And that’s what we do. We help you to get in touch with other affected parents, with people who have been living with the diagnosis of RB for a long time, and we help you so that your children can get to know other affected people with whom they can grow up from the very beginning. our motto: “Find your perfect match!” And then life looks different again.
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More InformationRB-MEETING 2022
Memories and Voices
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More InformationRB-MEETING 2019
10 years of KAKS
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More InformationRB-MEETING 2017
5th RB meeting
My "
" Elli-ABC
When diagnosed with retinoblastoma, those affected—especially parents and family members—enter an unfamiliar world that can be unsettling and frightening. That’s why “Mein Elli-ABC” exists. This digital encyclopedia guides you step by step and helps you understand what to expect after a diagnosis of retinoblastoma. It also helps you navigate the maze of complicated terms and difficult situations.
RB signpost
We have developed an RB signpost: So that you can climb the huge mountain that lies ahead of you on a safe path and then see things more clearly again. We will help you through the jungle of authorities, technical jargon, emotional lows and medical questions. For you to download.
Ophthalmologists and pediatricians, nurses, social workers, ocularists and affected parents and survivors. We would like to thank: Dr. Madlen Reschke and Dr. Bert Müller (Charite), Dr. Tobias Kiefer (University Hospital Essen), Dr. Rebekka Kaltenmaier (RB survivor), Eileen Eerdt (University Hospital Göttingen, pediatric nurse), Nikolai Weiss (ocularist), affected families, Candida von Hardenberg and Gregor König, KAKS
Discover valuable books, toys and information – everything for you and your child. Order now by e-mail at info@kaks.de and let us support you.
FRAGEN & Antworten
Talking about cancer - with your own child.
Knowing about the illness builds trust and gives the child the feeling of being included in the medical exchange and taken seriously. Clearly naming and explaining the illness prevents uncertainty and confusion. If the child knows exactly what is going on, it will also be more willing to participate in examinations and treatments.
Children who know nothing about their cancer start to have thoughts of their own, which can be completely misguided: For example, they may think that their illness is a punishment, that they have done something wrong. If your child doesn’t know what’s wrong or what to expect, this can lead to anxiety, stress and fear. Most children can sense that something is wrong anyway. It’s important to take them seriously and always be honest.
What you can and must say to your child depends on their age and what you think your child can understand. The following information briefly describes what children of different ages are likely to understand:
Children 0-3 years old
- cannot understand cancer
- are most afraid that medical staff will take them away from their parents
- are most afraid of medical tests that they do not understand
- need the certainty that they will not be abandoned in hospital
- cannot know what a procedure or hospital stay means far in advance. Nevertheless, parents should inform their children about the upcoming events in simple, clear and reassuring language.
- Preschoolers may be worried that they will stay in hospital forever.Tell your child that they will be able to go home when their treatment is finished (if this is the case).If you know how many more days your child will be in hospital, tell them this information.
Children 3-7 years old
- understand cancer when it is explained to them in simple terms
- are looking for a specific cause for the cancer, e.g. something they did or thought
- need the certainty that they are not to blame.
- need the certainty that they will not be abandoned
- are afraid of pain.Always be honest with your child when examinations are imminent, explain the treatments and procedures.Also that the doctors are there to help.
- Some pre-school children are afraid that they will end up living in hospital.It is important that you let your child know that they will be returning home.
Children 7-12 years old
- can understand detailed explanation
- are less likely to believe that their cancer developed because they did something wrong
- are more likely to understand that they need to take medication and undergo other treatments to get better
- are afraid of pain, so be honest with them about the pain that can occur during examinations and treatments
- find out about their cancer from others and from other sources, such as school, television and the internet.Listen and find out if there are any uncertainties or questions.Try to encourage your child to talk to you about what they read and learn so that they are not alone with their worries.
Teenager
- can fully understand their cancer and may have many detailed questions.You should be prepared for this.
- think above all about what the disease means for their daily lives: school, sport and friends.
- will find out about the disease everywhere and may come across information that is incorrect and intimidating.You or the treatment team should always be available to talk to them about the resulting fears.
- want to be involved in decisions about their treatment.
A single conversation with your child will not be enough.Have frequent, short conversations and offer to talk again and again.
- Be open and honest and encourage your child to ask questions.Answer questions honestly, even if this means that you don’t know the answer and have to do your own research first.
- Share your feelings with your child and encourage them to share their own.They are the most important source of information and support for your child.If they think they can’t share their feelings with you, they may think they can’t share them with anyone.Then they may feel alone.
Dealing with siblings?
The most important thing: clear information.Siblings must be informed about everything that is happening.Parents should be honest and explain exactly what the diagnosis is and what the treatment will look like, depending on the child’s age and stage of development.
It may help to arrange visits to the hospital to see the sick brother or sister and meet the treatment team.Encourage siblings to show and talk about their feelings and reassure them that their feelings are normal and important.Let them know at every opportunity that they are loved just as much as the sick child.Make sure your children know that they have not done anything to cause their sister or brother’s cancer and that the disease is not contagious.
Daily contact with a parent or trusted adult who is an integral part of the child’s life is essential.It is important that children spend time with parents that is dedicated just to them, friends and relatives can help you maintain routines.They are important.
Contact and inform the educators and teachers of the siblings so that they can also keep an eye on your children and help.
Children 0-3 years old
If at all possible, it is important that your baby or young child stays close to you when you are in hospital with your sick child.Even overnight.Many clinics now offer this option.
Use your cell phone, video and other means so that your child can see and hear you in real time.
Record lullabies, stories and messages in case you can’t be home.
Always remind your healthy little ones that mom or dad will be back soon.Cuddle with them a lot.Other parenting topics – such as getting clean etc. – are not so important now.
Children 3-5 years old
Explain in simple terms that the brother or sister is ill and that the doctors are now helping. Continue to set limits on the child’s behavior, just as you did before, because this is part of the child’s routine.At this age, the child may suddenly need a diaper again or have tantrums – this is normal.And it will pass.If you are sad, explain your feelings: I am crying because I am sad because your little brother/sister is sick.Always take time to say that the sibling is not to blame for their brother or sister’s cancer.
Children 6-12 years old
It helps when children see that other children are going through the same thing—take advantage of opportunities where siblings can talk to each other, perhaps even spend time together at a camp or over a weekend. Answer all questions honestly, including the question: “Is he (or she) going to die?”* Repeatedly reassure your children that their sibling did not cause the cancer. Siblings must still be allowed to have fun—without feeling guilty.
Encourage your children to write to their sick brother or sister, call them, put together a care package, draw a picture, or send voice messages. Explain that you sometimes feel sad and desperate, and that that’s okay. If possible, let the sibling help decide where to go after school and who should take care of the child when you can’t be there.
Children 13-18 years old
Convey to your child that you as a family are capable of overcoming this crisis.That you can do it together.The same applies here: look for sibling groups!The exchange helps enormously. Older children often want to understand much more.Therefore: visiting the clinic, talking to the doctors – all this must be allowed and made possible.Religious and spiritual questions often come up at this age.Also concerns.This discussion is important and right; teenagers should have a say in where they go after school if there is no one at home.But the basic rule is: continue with school and hobbies!They should concentrate on their school.They have just as much responsibility for their success at school as they did before their brother or sister was diagnosed with cancer.If the teenage siblings suddenly display unusual, risky behavior in response to the stress within the family, do not hesitate to ask a social worker or psychologist for help.
Paolo and Giulia
“Guilia always tapes one eye because she wants to know what it’s like to see with one eye.”
What does a child's cancer diagnosis do to the parents and how does life go on afterwards?
At the time of diagnosis and for some time afterwards, parents rarely realize what the diagnosis of cancer triggers in them, parents function – for the child, for the whole family.
Often, and only much later, individual symptoms such as
- Panic attacks
- Fears
- Depression
- Flashbacks
- etc.
During the workshop on this topic at the 2022 RB Meeting, all participants agreed—you have to keep functioning and can’t let yourself falter. But is it realistic to think that a diagnosis would pass you by without leaving a trace? No.
It was comforting to hear that those affected have had—and continue to have—similar, identical, or even completely different experiences and thoughts. That you’re not alone with your fears, anxieties, and even your own symptoms. And that it’s perfectly normal for men and women to process this difficult situation very differently: that men often talk about it less—sometimes not at all—and can’t share their fears and worries, even though they suffer just as much.
We had an in-depth discussion about which triggers immediately catapult you back into the anxiety-filled situation of the diagnosis, which phases you go through, and how differently long they last.
1. Shock and denial phase
2. Anger and frustration phase,
3. Uncertainty and reorientation phase
4. Acceptance phase
Why my child?How am I to blame?Why can’t I protect my child?What is the point of this illness?Why didn’t I recognize it earlier?
Questions that can be a real headache, but which were sympathetically addressed in the group and with which you are not alone if you dare to share them.Which the participants of this workshop did openly!!! And it felt good!A sorrow shared is a sorrow halved.
It is important to know that for many symptomssuch as flashbacks can be remedied by contacting the right therapists or therapists specializing in EMDR (eye movement desensitization and reprocessing).For panic attacks and anxiety, see a behavioral therapist.
It is sensible and important to get help, as you can only “work* for your child in the long term if you remain healthy yourself.
Kindergarten, school?
Which school is right for my child?Is my child entitled to compensation for disadvantages at school and how can I obtain this?Where do my child’s concentration problems come from and what can I do?
When children are diagnosed with retinoblastoma, they are usually still very young.The difficult time is often still very much in the family’s bones and starting kindergarten or school is a major challenge for all family members.Many families find it difficult for their own child to leave the family and the protective environment.And questions arise: how and how much should I tell about my child’s illness?How will the kindergarten, how will the school, how will other parents and children react?
The transition to kindergarten or school is an important step towards a child’s independence.Have confidence in your child, encourage them in this important phase of their life, talk to them, make your child want to meet other children, play, learn and be normal.
The educators have many questions, some are unsure how to deal with the children, their history and, above all, how to handle the prosthesis.
What helps is an open, detailed preliminary discussion with the educators and teachers.Take at least an hour for this and request this from the kindergarten or school.Any questions that can be clarified in advance will give the teachers confidence in dealing with your child.
Explain exactly what happened.
Explain what retinoblastoma is.
Explain what treatments your child underwent.
Explain how you perceive your child.
Explain what your concerns are.
Be open to all questions from the educators and teachers, and try to take their concerns seriously and answer their questions thoroughly.
Always remember: this is a completely new topic for the educators and teachers as well, and they need to be guided into it carefully.
Offer the help of KAKS. We offer regular Zoom meetings for educators and teachers. We have books and magazines that we provide free of charge, which you’re welcome to share with the educational staff. This helps explain the situation.
Explain what your specific requests are for the educators and teachers.
Explain what they need to be mindful of.
Bring an eye prosthesis with you and feel free to share it with the educators and teachers so they can understand how to handle it and feel more comfortable doing so.
Order the book Elis, Elli und Elba from KAKS – it explains exactly how to deal with the ocular prosthesis based on the story of two children.It also explains what a prosthetic eye actually is, what it looks like and how to use it.
Order the KAKS kindergarten or school starter set!We offer the KAKS kindergarten starter set for the start of kindergarten and the KAKS school starter set for school, which we send to everyone free of charge. It has been proven that the kindergartens are very happy to accept this offer, as it gives them some security in dealing with the children.The kindergarten starter set includes educational material, a storage box for a replacement prosthesis, cotton pads, saline solution, eye plasters, Bephanten eye ointment and a suction cup for contact lenses/artificial eyes.Order free of charge by e-mail to info@kaks.de.
Look forward to going to kindergarten with your children.It will be an adjustment for the whole family.But it’s a time when you can learn to let go, when you can regain your strength and concentrate on other things, your job and friendships.
Openness, honesty and time – all of these also apply when dealing with other parents or children.If questions are answered openly and honestly and things are explained simply, the topic quickly becomes normal for everyone involved.
If you have any questions or suggestions, you can contact us at any time!
Elli - the one-eyed elephant?
This lovingly designed soft toy will take your child’s heart by storm.Elli is not only a cute soft toy, but also a symbol of courage and self-acceptance.His missing eye makes him unique and special.With Elli by your child’s side, they can feel safe and forget all their worries.Whether it’s cuddling with Elli or confiding secrets – Elli will always be a loyal companion.
Over 2,000 children worldwide have already received an Elli from the Children’s Eye Cancer Foundation.
Resilience and anti-bullying training
Resilience is the magic word
Resilience means the ability to bounce back. Resilient people are better able to cope with crises, accept them with greater composure, and—in the best-case scenario—grow from them.
Building Mental Strength
To help children develop resilience, it’s important to reenact unpleasant situations and talk about them: in our role-playing games, children should sometimes play the bully, sometimes the annoying ringleader, or the loudmouth who wants to boss everyone around. Role-playing can help break the cycle of bullying and help children understand how the “bad guy” thinks. It’s important not to focus solely on the bullies and victims, but on all the people involved in the bullying situation.
Turn around, walk away
We teach children that it’s okay to remove themselves from uncomfortable situations: that means they’re allowed to turn around or walk away. That’s better than coming across as sad or shy. Looking the other person squarely in the eye, with confidence—that helps. And it’s best to find other kids to play and laugh with. These are difficult situations, but we can practice them; we can encourage and empower our children in this way.
Teasing: A Cry for Attention
We need to realize that often, children who tease others are simply seeking attention because they aren’t getting it at home or because they have another problem they can’t articulate. Confronting them isn’t a successful strategy. Even though many parents believe this and tell their children, “Don’t let them get away with it!” The conflict usually doesn’t stop—it may even escalate.
Be Clear—Communicate Clearly
Another major problem that also arises starting at age five is taking things. At first, it’s toys; later, it’s cell phones or sneakers. That’s why it’s important to set clear boundaries and communicate them clearly.
You have to practice, practice, practice: “Give me back my cell phone! Give me back my cell phone!”Don’t shout or get aggressive.Just be clear and insistent.So keep repeating and repeating “Give me back my cell phone” until the other person gives up.If this doesn’t work, it helps to shout “Stop” loudly.This frightens the other person and, in case of doubt, draws the attention of adults to the conflict.
The same applies to the areas of grabbing and holding: “Let go of my arm, let go of my arm” feels and sounds strange when you do and say it for the first time – but it helps.So the same applies here: practise, practise, practise!
What does you good and gives you strength
The points described above are a small excerpt from resilience training with children aged between five and eleven, which parents can try out at home. TIP: make and design a “protective shield” with the children!”What is good for you? What gives you strength?”This is exactly what is painted on.The children (and parents) can hang it around their neck if things aren’t going well – and let everyone know.But otherwise: talk, talk, talk. As parents, we should always ask, inquire and listen – and pay particular attention to the nuances.
KAKS volunteer Brit Underwood is a qualified trainer for resilience and self-assertion.KAKS regularly offers these courses for the children because they are infinitely valuable.Interested?You can find out when these courses take place in our RB-World app and under Offers & Dates.
Jutta Riederer von Paar is a qualified psychologist and alternative practitioner for psychotherapy.Parents are welcome to contact her by email if they have any questions.
KAKS LIV(F)E
Our KAKS LIV(F)E takes place year-round via Zoom.
In our live format, KAKS LIV(F)E, we invite experts on all things RB. You’ll find out the dates and content in advance via our RB-World app and our KAKS newsletter by email.
Here you can get valuable information, ask questions, share your own experiences, listen, and exchange ideas. These are valuable insights that offer guidance in difficult situations.
Following the official portion of the event, participants will have the opportunity to interact with one another, share experiences, learn from each other, and network.
With our KAKS LIV(F)E format, we want to provide you with valuable information, but also create a platform for exchange where you can listen to one another and share experiences—in a relaxed atmosphere.
Contact
ELLI'S EYELAND
Elli’s Eyeland by KAKS
Wiesenstrasse 32
40549 Düsseldorf
