Living With Retinoblastoma ~ Part IV

retinoblastoma2Today we continue with Part IV, the final post of Living With Retinoblastoma, a fast growing eye-cancer which affects babies and young children.

Today’s post covers everything you need to know about your child going to school or going back to school after retinoblastoma, and includes some great tips on how to help your child cope.

Retinoblastoma affects about 1 in 15, 000 live births, and an estimated 9,000 children develop the cancer globally each year. These posts cover living with retinoblastoma for those who have either had treatment for or have been through enucleation (surgical removal of the eye).

The reason for the posts is to help both children with retinoblastoma and their parents cope for the next few years to the rest of their lives…



Retinoblastoma and its treatment can disrupt education, social and cognitive development, but children can still thrive in school with positive support.

Retinoblastoma can disrupt Education, as well as Social & Cognitive Development, during and after therapy.

Most children with retinoblastoma have impaired vision. Children treated with Radiation Therapy and/or high doses of Chemotherapy may develop long-term neurotoxic effects, impacting their learning style.

Repeated isolation may also delay the child’s development of social skills and self-confidence. Hospital visits, treatment side effects, and loss of vision can impact the child’s ability to fully participate in daily school life.

Most children with retinoblastoma are under five years of age at diagnosis, but many will be attending preschool, or preparing to start school. Many children find beginning or returning to school a great relief, but some struggle with the experience and need more emotional support to cope.

School offers a place of fun, stability and routine – a chance to escape the uncertain medical world the child has come to know, However, changes in vision or appearance may cause intense anxiety. Transitioning between primary, junior and senior school can also be an especially challenging time for children.

Many children with retinoblastoma experience some degree of difficulty in school, but most problems can be resolved with planning and solid communication. Sensitivity is crucial in developing the child’s confidence and self‑esteem.

Whatever stage of treatment or education your child is at, you can help her and the school adapt to new circumstances. Working together, you and the teachers can ensure your child receives all the necessary resources available to assist him/her with his/her education and independent living.


Effects of Treatment on Education

Many effects of cancer treatment are invisible, especially when the child has high intellect.

This is common among retinoblastoma survivors. Children may do less well in subjects requiring good vision, rapid processing skills, short-term memory or sequential mathematical operations.

Teachers often conclude the child is inattentive or needs to work harder.

However, if your child struggles to keep up in class, or lacks enthusiasm for school, he or she may be experiencing one or more of the following challenges:

Dominant Hand

Be aware of your child’s dominant hand in relation to the affected – or most affected – eye. If she is left-handed, she will already have difficulty writing as the hand moves ahead of the text, as opposed to behind it when writing with the right hand.

Children with vision loss may turn their head to see more clearly. This is more pronounced when the dominant hand is on the same side as the eye with least vision. Turning the head misaligns the shoulders, causing sloping lines.

Many children with retinoblastoma cannot focus well, especially if their eye cannot remain still. They may have difficulty forming straight lines, and their writing may “wobble”. Encouraging your child to write more slowly, or use print rather than joined up text, nay improve legibility.

Reading & Comprehension

Children with impaired vision read slower than fully sighted peers. Small font size, poor contrast between text and background, italics and certain typefaces may pose a challenge.

Children may struggle to explain the plot or follow written instructions if concentration is consumed by reading rather than absorbing the content. Clear type and larger fonts or audio can overcome these issues.

If the problem persists even with these interventions, a learning disability may be emerging. If this happens to your child, work together with the teachers to identify and address the problem so your child can thrive.

Memory and Processing Skills

Radiotherapy can reduce mathematical processing skills. This is not an indication of lower intellect. Allowing more time to complete tasks usually produces a very good or excellent standard of work.

Radiotherapy can also impact the child’s ability to memorise and retrieve facts. If this is an issue, work with the teacher to develop practical solutions, including memory strengthening exercises.

Planning & Organisation

Planning is crucial for children with impaired vision, as they may require more time to complete their work. It may be necessary for your child to develop a keen set of organisational skills, but a well organised child will be calmer and more productive.

Body-language is a form of non-verbal communication through body posture, gestures, facial expressions and eye-movements. Research suggests that body-language accounts for around 70% of all communication between humans.

Children with low vision often cannot clearly detect body-language. For example, a visually impaired child may be seen to “interrupt” because he/she misses the subtle visual indications individuals generally give immediately before speaking. Ensure that your child’s teacher is aware of this, and share any solutions you may have developed to help with the problem.

Most retinoblastoma treatment occurs at an age when children are developing essential social skills through interaction with others. If your child is struggling socially, talk with him/her about his/her concerns, and focus on building their confidence. It may also help to ask a psychologist for advice.

Some treatments and associated stresses can cause attention defi­cits that result in inattention and/or hyperactivity. Children who have had treatment for cancer may be more impulsive or easily distracted than their peers, especially during active treatment. If your child experiences these types of issues, discuss them with their teachers and work together with them to identify potential solutions.


Preparing for School

After the trauma of your child’s eye cancer, preparing for school can be either a challenge or a welcome relief. If your child is still receiving treatment, this will add an extra dimension to your planning for school.

Your child’s needs will depend largely on how the retinoblastoma and its treatment has affected his/her vision.

If your child has unilateral retinoblastoma with good vision in the unaffected eye, he/she will have few limitations and will likely be able to continue their life as normal after treatment.

If your child has impaired vision in both eyes, he/she will need much more support in school. He/She may need support from a teacher of the visually impaired to learn Braille and mobility skills. He/She may require special equipment, larger print or Braille materials, and one-on-one support in class.

Individual Education Plan

Visit the pre-schools/schools in your area, and soak up the atmosphere; chat with the staff; find out how they support children with special needs, and consider whether they will be able to look after your child and help him/her reach his/her full potential.

Prepare the staff who will look after your child. Explain his/her cancer and treatment, and how this may affect him/her at school. If the school has a teacher or psychologist that is responsible for children with special needs, ensure that this person is fully involved in all discussions and in setting up your child’s education plan.

Meet the class teacher before school begins. Talk with the teacher about your child’s needs, and clarify the education plan. If you are not happy with any element of it, discuss your concerns with the class teacher and request a further meeting together with the special needs coordinator.

If your child has an artificial eye, develop an artificial eye plan detailing what to do if any issues arise. (see Artificial Eye Care at School further down)

If he/he is receiving chemotherapy, explain infection risk and create an infection control plan. (see Infection Control at School further down) Make sure that you are contacted immediately if there is any problem.

Bullying unfortunately can tend to become a problem when children do not have sufficient information to inform their actions. Discuss how the teacher can help other children understand about retinoblastoma, to support your child and reduce or prevent misunderstandings, fears and exclusion that lead to bullying.

Discuss with your child how much information he/she is comfortable with you and the teacher sharing with other children in the class. Explain the benefits of knowledge but respect his/her feelings – if he/she doesn’t want other people to know about their cancer or special eye, ensure that the teachers are aware of this.


School Activities

Being able to embrace all possible school activities is important to every child’s complete well-being. Children should not be excluded from classroom, playground or physical education activities unless a doctor instructs this.

Group work and play develops confidence, social skills and a sense of belonging, and should be actively encouraged.

Supporting a child with cancer and/or limited vision in the classroom, playground and during sports activities is vital to ensure they feel welcome, involved and respected.

Children with impaired vision may need to sit so they don’t have to turn awkwardly to see, e.g. a child who sees with only the right eye may need to sit to the left of the room to accommodate the loss of left visual field. Poor seating can result in headaches and neck pain and loss of interest in school activities.

Some children only have to turn slightly, but many may need to move to a completely different seat. Older children learn to find appropriate places to observe and participate. Younger children may need more support.

Children who received radiation therapy may be very sensitive to bright sun and artificial light. Wearing sunglasses or a peaked/wide brim hat on sunny days can reduce discomfort and ensure the child remains fully engaged in activities.

If vision in both eyes is impaired, your child may need to sit near the front of the classroom, and being able to hear the teacher clearly will be vital. Straining to see and hear will affect his/her posture and enthusiasm for school. The resulting tension may also cause headaches and muscle pain.

During chemotherapy, or immediately after enucleation, certain activities may be restricted. When the oncologist and ophthalmologist give the OK, your child can swim and do sports as usual.

retinoblastomaDepending on the degree of vision loss, your child may need help with hand-eye co-ordination activities like ball games. Children adapt well, but these difficulties can affect confidence, so sensitivity is essential, especially when assisting the child in the presence of classmates.

Encourage your child to wear protective glasses during sports that risk eye injury. Ask the teacher to ensure he/she wears them, and suggest they be promoted to other families so your child does not feel different, and so that other children have extra protection too.

Your child should not swim until his/her ophthalmologist gives the OK after enucleation surgery. Swimming risks infection of the eye socket before the surgical wound has completely healed.

If your child has an external venous catheter (hickman, broviac or “wiggly”), she will not be allowed to swim. The external line must be kept dry to prevent infection. Children who have a port-a-cath (under the skin) can swim, but some doctors prefer they avoid swimming due to potential infection risk.

Water play can be very therapeutic, and is fine so long as it does not cause the external line to become wet. Ensure your child’s teacher checks the line is fully waterproofed before and after water play activities.

Minimum fuss is very important if your child is not able to participate in an activity. Ask the teacher to provide a fun alternative and involve other children in it. This will support your child’s emotional well-being and reduce the risk of her feeling different or inferior to her classmates.

Artificial Eye Care at School

Most children with retinoblastoma have an eye surgically removed to save their life.

Teachers will naturally worry about what your child looks like without the eye, and what they should do if it falls out. Help them understand enucleation, the prosthesis and artificial eye care, and prepare them for situations that may arise. This will reduce stress for your child, the staff and you.

Show the staff an artificial eye, and a photograph of a child when the eye is removed. Explain that the socket resembles skin inside the mouth. This will dispel misconceptions and fears, and give them a chance to ask questions.

Sensitive support will be especially important in school if your child does not have an artificial eye or is not able to wear the prosthesis temporarily.

Provide a simple written instruction about wiping the lids of the artificial eye to remove discharge. Give a copy to your child’s teacher and the school nurse. Showing how to wipe the lids and eyelashes will probably boost the teacher’s confidence – remember how you felt when first cleaning your child’s eye.

care_waterIf you prefer that the teacher encourage your child to clean the eye, be sure she has the skills to do this by practicing at home. Ask your child how she would like to handle cleaning of the eye at school – by herself or with help from an adult.

Agree with the teachers what will happen if the eye turns round or is dislodged. Provide a tub labelled with your child’s name to keep the eye safe if it is not immediately replaced. Ask the teacher to document in the plan where this is stored, and when it is used.

If you wish to put the eye back in yourself, make sure your current contact number is on record, and that the teacher knows she should call you in when a problem arises. The socket will come to no harm if the eye is left out until the end of the day, or until you arrive.

Explain how your child copes with such events. When teachers anticipate your child’s response, she can minimise fuss and limit the curiosity of other children.

Decide with your child and the teacher whether he/she will stay in class or be allowed to wait in a quiet place until you arrive. Ask that he/she be permitted to wear shades until the eye has been replaced, if he/she wishes to.

The trust and respect between your child and her teacher may give him/her confidence to replace the eye, or allow the teacher to do this. This also depends on your relationship with the teacher and the training you give.

Deliberately Removing the Eye

If your child removes the eye for effect, the least fuss made the better. If she knows how to replace it, ask the teacher to discretely encourage her to do so. If no attention is forthcoming, children quickly stop removing the eye.

Although moving the eye around and taking it out can be a nuisance, it is a good sign that your child is accepting of the eye and not self-conscious. This should be encouraged whenever possible.

Infection Control at School

If your child is receiving chemotherapy, avoiding exposure to communicable diseases is very important. The need to avoid infection exposure continues for some time after therapy, depending on the treatment received. Explain this clearly to the teachers, and develop a plan to minimise your child’s risks of infection.

Prevention is better than cure, but prompt treatment is vital following suspected exposure to infection or when your child has symptoms. Ask the teacher to immediately report any illness in the school or anything that is unusual for your child, even if it seems trivial.

retinoblastomaRemind the teachers that frequent, thorough hand washing is the best way to prevent spread of infection. Ask that your child use liquid soap, baby wipes or antibacterial gel rather than a bar, and make sure your child knows how to wash his/her hands.

Ask the teacher to ensure that everyone (adults and children alike) washes hands before handling food, after working or playing outside, and after using the bathroom or touching an animal.  Explain the importance in protecting your child during treatment, to avoid misunderstandings.

Insist that the teacher apply sunscreen on your child’s exposed skin, or ensure she does so herself before going outside on sunny days.  Chemotherapy can make children sun sensitive, and sunburn is a potential site for infection.

Ask the teacher or school nurse to wash all small cuts or grazes with soap and water, then rinse with hydrogen peroxide and cover with a clean dressing.

Make sure the teachers understand they must call you immediately if your child develops a temperature. Explain that they must not give your child aspirin, Motrin, or ibuprofen as they may reduce your child’s ability to clot blood.

Explain about the particular dangers of chicken pox, chicken pox, shingles, mumps and measles while your child has a reduced immune system. The teachers and school nurse should work with you to develop an early alert plan to use when there is an outbreak of a contagious disease.

Ensure that the teachers notify you immediately if your child is exposed to chicken pox so the doctors can give appropriate preventative treatment. Exposure occurs if your child comes into direct contact with an affected person or stays in a presumably contaminated room for ten minutes or more.

Below are some suggestions of how to ensure you are promptly notified of potentially serious illness among your child’s classmates:

  • Ask if there is an established infectious disease notification strategy, and if so, how it works.
  • Ask your child’s teacher to notify you of all contagious illness among classmates.
  • Ask the receptionist or secretary to notify you when parents call to say their child is absent due to a contagious illness such as chicken pox.
  • Ask the school to notify all parents in writing and ask for their help.


School & Older Children with Cancer

In the emotionally exhausting days after diagnosis, informing the school does not occur to most parents. However, this should be a priority when your affected child or his/her siblings are of school age.

Good communication with teachers from the start will help you develop invaluable collaboration throughout your child’s treatment and recovery and will go a long way to ensuring your affected child, brothers and sisters feel welcome and cared for at school.

Identify a suitable person to liaise with you, the hospital and school, to maintain the flow of information, such as  a hospital social worker, child life specialist, nurse, hospital or school nurse or guidance counselor.

When seeking an education advocate, look for effective organisational and communication skills and ensure the person has a good understanding of the education system. You must also have personal confidence and trust that the individual will work in the best interests of your child.

If your child is to receive treatment over a long period of time, regular updates will be very important. Update the school on your child’s medical condition and treat­ment, as well as the emotional well-being of all your school age children. The school can then discuss education during absence, and a proposed date for returning to school.

If your child is absent from school for an extended period, staying in contact with teacher and classmates will be vital to her personal well-being.  Encourage your child and classmates to stay in touch, and let the teachers know any restrictions in visiting or gifts sent to the hospital.

Exchanging cards, letters, telephone calls, photos, artwork, and audio or video messages are all simple ways in which the affected child can continue to feel involved with school life.




About LFCT

CHILDHOOD CANCER and CHILDHOOD CANCER AWARENESS Little Fighters Cancer Trust is a non-profit Childhood Cancer support organisation that offers support and aid to Children with Cancer and their families. When a child is diagnosed with cancer it affects the whole family. One of the parents, usually the mother, must give up their job to care for the child and this creates financial problems for the family. In South Africa especially the majority of these families are not well-to-do; many of them are rural. A diagnosis of cancer can wipe out any family’s finances, let alone a poor family. The costs of special medications, special diets, hospital stays, transport to and from the hospital or clinic and accommodation and food costs for the mother who spends most of the time at her child’s bedside are astronomical. These are the people and problems that fall through the cracks, and these are the people that Little Fighters Cancer Trust has pledged to help in any way possible. LFCT takes a holistic approach to assisting the Children with Cancer and their Families, with the main aim to be the preservation of individual dignity and pride. Little Fighters Cancer Trust also focuses on promotion and advocacy of National Childhood Cancer Awareness in an effort to increase awareness of Early Warning Signs of Childhood Cancer. This would result in earlier diagnosis, giving the Child with Cancer more of a chance at Treatment and Survival. See "About" for more Background info

Posted on 14 October, 2016, in Advice & Tips, Blog and tagged , , , , , , , , , , , , . Bookmark the permalink. Leave a comment.

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