RB: Together
strong as a family!
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
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.
RB School: Information for teachers and parents, for starting school, changing schools, transfers and changing teachers.
“How wonderful that such a guide finally exists!
I remember well the time when we were full of fear, shortly after the diagnosis and also later when follow-up therapies were on the cards and we had no one.
A great guide.
Thank you!”
A concerned father about this guide.
We would like to thank everyone who has helped us
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
Gift world
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.
QUESTIONS Answers
Talking about cancer - with your own child.
Many parents believe that they can protect their child by not telling them about the cancer and avoiding the word “cancer”.
However, it is important to describe the disease to your child as “cancer” and also to explain more precisely what type of cancer it is.
Sooner or later, other people will confront your child with the word “cancer” and they need to be prepared for this.
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?
Anger, sadness, fear and guilt – when a brother or sister is diagnosed with cancer, the siblings are under great stress.
They fear for their brother or sister and sometimes even worry that they themselves may have done something to cause their sibling’s cancer.
And: siblings suffer particularly from the fact that they receive less attention from their parents.
School and friends – that also gets out of balance when everything changes at home.
But parents can do a lot.
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 feel the same way – make use of opportunities where siblings can talk to each other, perhaps even spend a camp or a weekend together. Answer all questions honestly, including the question: “Will he (or she) die?” Reassure your children repeatedly that the sibling did not cause the cancer. Siblings must still be allowed to have fun!
And without a guilty conscience.
Motivate your children to write to their sick brother or sister, make phone calls, pack a parcel, draw a picture or send voice messages.
Explain that you sometimes feel sad and desperate and that this is okay.
If possible, let the sibling decide where to go after school and who should look after 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.
And even then, they are often suppressed, not addressed, because they don’t seem so bad compared to the child’s illness.
During the workshop on this topic at the RB Meeting 2022, all participants agreed that you have to function and can’t fall yourself.
But is it realistic to think that the diagnosis will pass you by without a trace?
No.
It was good to hear that those affected have and have had similar, identical or completely different experiences and thoughts.
That you are not alone with your fears, anxieties and symptoms And that it is completely normal for men and women to process this difficult situation very differently: that men often talk less about it, sometimes not at all, and cannot share their fears and worries, even though they suffer just as much.
We had an intensive exchange about which triggers immediately catapult you back into the fearful situation of the diagnosis, which phases you go through and how long they last.
1Shock paralysis – denial phase
2. Anger and resentment 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 what exactly happened.
Explain what retinoblastoma is.
Explain what therapies your child has undergone.
Explain how you perceive your child.
Explain what your concerns are.
Allow educators and teachers to ask questions and try to take their concerns seriously and answer their questions accurately.
Always remember: this is a completely new topic for educators and teachers too, and they need to be introduced to 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 and that you can offer to the educational staff.
This helps when describing the situation.
Explain what your special wishes are to the educators and teachers.
Explain what they need to pay attention to.
Bring a prosthetic eye and give it to the educators and teachers so that they can understand and take it for granted.
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 resistance.
Resilient people can cope better with crisis situations, take them in their stride and, in the best case, grow from them.
Building mental strength
To develop resilience in children, it is important to re-enact unpleasant scenes and talk about them: in our role-play games, the children should play the mean one, the unpleasant spokesperson, the loud one who wants to boss everyone around.
Role-playing can help to break the bullying cycle and understand what makes the “bad guy” tick.
It is important to focus not only on the perpetrators and victims, but on all the players who play a role in bullying.
Turn around, walk away
We teach the children that it is okay to avoid unpleasant situations: in other words, they are allowed to turn around or walk away.
This is better than appearing sad or shy.
A clear look into the other person’s eyes, a brave look – that helps.
And it’s best to find other children to play and laugh with.
These are difficult situations, but we can practise them and encourage and strengthen our children.
Annoyance: a cry for attention
We have to imagine: Often, children who annoy others only want attention themselves because they don’t get it from home or have another problem that they can’t articulate.
Going into confrontation is not a winning strategy.
Even if many parents believe this and tell their children: “Don’t put up with it!”
The argument usually doesn’t stop and may even become entrenched.
Be clear – communicate clearly
Another major problem that also occurs from the age of five is taking things away.
Early on it’s toys, later it’s cell phones or sneakers.
It is 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.
Graduate psychologist
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.
Get the RB-World app 👋
Here you can find other affected people in your area with the help of an interactive map and valuable information.
You will also be the first to find out what events KAKS is offering.
In the App Store and on Google Play!
KAKS regulars' table
Every first Monday of the month from 8 pm
Our KAKS regulars' table takes place all year round via Zoom.
Talking, listening, sharing.
Valuable impulses that offer orientation in difficult situations.
We look forward to seeing you.
Have you just received a diagnosis of RB for your child?
Are you affected yourself?
Would you like to get in touch with other families and people affected in your area?
Do you need help or just someone to listen to you?
Would you like to know how others live with the diagnosis?
Are you afraid of what lies ahead for you?
Or are you doing well despite your illness and have a positive story to tell?
With the KAKS Stammtisch we want to create a platform for exchange, listen to you, share experiences – in a relaxed atmosphere. At the KAKS Stammtisch there is always either an encourager, a family whose child fell ill a long time ago and who shares their experiences with us, or one of the KAKS team.
Just click in, listen and join in.
Important: The link leads you directly to the meeting, pre-registration is not necessary.
Please switch on your camera and microphone.
We look forward to seeing you!
Contact
ELLI'S EYELAND
Elli’s Eyeland by KAKS
Wiesenstrasse 32
40549 Düsseldorf
Family-oriented rehab at the Syltklinik 👋
A great offer from the Children’s Cancer Foundation that everyone should take advantage of.
After all, cancer treatment takes a toll on everyone.
In rehab, not only the sick child is looked after, but also the whole family, including siblings and parents.