Retinoblastoma Care During the COVID-19 Pandemic

Saturday August 1, 2020

COVID-19 continues to impact life and medical care. WE C Hope CEO Abby White reviews the facts of COVID-19, how we can protect ourselves and others, COVID testing, retinoblastoma care during the pandemic, safe travel to medical care, and how to support ourselves and our children.

Microscope image of coronavirus

COVID-19 has been in our world for more than eight months now, and our lives have been impacted more radically than most of us imagined when the Pandemic was first declared back in March.  Everything has changed – familiar ways of being with one another, communicating, shopping, travelling, requesting and receiving medical care…

The virus, the necessary precautions to manage its risk, and the impacts and uncertainty it brings, cause particular anxiety for families and individuals affected by retinoblastoma.  Families and survivors are in active cancer treatment and close follow up care.  Survivors are navigating the pandemic and its impacts with sight-loss. Diagnosed children and siblings who are already emotionally stretched after years of cancer therapy, are struggling to cope with dramatic changes to their world.

Below, we expand on some of the information shared in our March 21 blog post, Questions About COVID-19 and Retinoblastoma, in response to the most urgent concerns right now.  We review the facts of COVID-19, how we can protect ourselves and others, COVID testing, retinoblastoma care during the pandemic, and how to support ourselves and our children. We hope you will find this helpful.

This continues to be a rapidly evolving global situation. Please follow the public health guidance issued in your country of residence and individual health care team.

If you have any concerns about your health or your child’s health, please contact your retinoblastoma specialist, your oncologist, or your primary physician.  They should be informed of the local situation, and be able to give you individual advice.

1. What is COVID-19, How Does It Spread, and What Are the Symptoms?

Coronavirus Disease COVID-19 is a new strain of the Coronaviruses (CoV) virus family that cause illness ranging from the common cold to Severe Acute Respiratory Syndrome (SARS). COVID-19 is shorthand for “CoronaVIrus Disease 2019” – 2019 noting the year this strain was identified.

Coronaviruses spread through droplets when people cough or sneeze, or simply through the process of speaking. The droplets can be inhaled by other people in close proximity (about 6 feet / 2 metres). They also stay alive on skin and other surfaces for up-to 72 hours, and can be transferred by hand, particularly when someone touches their face.

A person with COVID-19 may develop symptoms 2-14 days after being exposed to the virus.  A wide range of symptoms have been reported, from mild to very severe.  The most common signs of infection are:

  • Fever or chills
  • A new, persistent cough
  • shortness of breath
  • New loss of taste and/or smell
  • Fatigue
  • Headache
  • Sore throat
  • Muscle or body aches
  • Congestion or runny nose
  • Nausea or vomiting
  • Diarrhoea

These symptoms may be caused by other infections, and the person may not have COVID-19. However, due to the associated risks at this time, COVID-19 should be considered the most likely cause until it is ruled out by a swab test.

A person may have COVID-19 infection with no symptoms at all, or very mild symptoms. In severe cases, infection can cause pneumonia, severe acute respiratory syndrome, and kidney failure.

Many research studies and clinical trials are taking place around the world to develop effective treatments and preventive vaccines.  However, there is currently no cure, licenced therapy or proven vaccine.  COVID-19 continues to spread in many countries and remains a serious global health risk.

The best way to prevent spread of infection is to avoid exposure to the virus, and protect others around you, whether you have symptoms or not.

2. How Do I Prevent Infection?

Wash your hands frequently with soap and water for at least 20 seconds, and teach your children good hand hygiene.  Use hand sanitizer if soap and water are unavailable. Ensure the sanitiser gel contains at least 60% alcohol. Always use hand sanitizer after taking public transport, visiting shops or spending time in other high traffic public places.

If commercial hand sanitizer is not available, you can make your own sanitizer gel. However, the correct percentage of alcohol and proportion of ingredients must be used for the recipe to be effective, and homemade sanitizer gel is not advised for use with children, as safety of the product cannot be guaranteed.

Clean your hands especially after blowing your nose, coughing, or sneezing into your hand, and before and after:

  • touching your face
  • handling your cloth face covering
  • visiting shops or other public spaces
  • using public transport
  • eating or preparing food
  • using the bathroom
  • changing a diaper
  • caring for someone who is unwell
  • touching pets and other animals

Even very young children can quickly learn and enjoy independent handwashing. You can transform this routine activity, and teaching the skill, into a fun sensory experience, with special soaps, bubbles and music.  Learn more with our parent guide to teaching kids handwashing

Particularly avoid touching your eyes, nose, and mouth with unclean hands.  If possible, wash your hands with soap and water for at least 20 seconds before and after touching your face, or use a hand sanitizer containing at least 60% alcohol.

If you are at home in isolation and all hands are clean, it is OK for a child to touch their face and eyes, and may even be necessary to help them soothe themselves after treatment. However, it is important to have plans in place to reduce touching around the face and eyes as much as possible.

Visit our Limit Face Touching Guide for suggestions of fun strategies you can try to help divert kids’ hands and minds away from their face.  Manipulative toys, music, games, and simple distraction actions can all be effective tools for children of different ages. Providing some preparation before treatment can help familiarize children with the distraction toys, songs and games, and prevent excessive face touching later.

Catch your sneeze or cough with a tissue, then throw the tissue in a bin.  It you don’t have a tissue, use the inside of your elbow.  Try to do the same for your child, and teach them the same skill if they are old enough. Immediately wash your hands with soap and water for at least 20 seconds, or use a hand sanitizer containing at least 60% alcohol.

Avoid contact with people you know to be unwell, even if they live in your home and have only mild symptoms.

Physical distancing recommendations are determined by the speed and distance droplets can travel through the air. Research findings differ, and guidelines vary by country, but researchers and health experts agree that the further away you are from other people, the more you are safeguarded. It is probably easiest to maintain a 2 metre / 6 feet distance as this is about the same length as:

  • the armspan of the average adult
  • twice the armspan of the average child
  • the length of two shopping trolleys
  • the length of standard bed
  • half a parking space
  • Four adult paces
  • A 3 seat sofa

Try to maintain 2 metres / 6 feet distance between

  • anyone you live with who is unwell; and
  • anyone you do not live with, at all times.

Remember that a person with COVID-19 may be infectious for several days before symptoms develop, and some people never develop symptoms. They may be unaware they have the virus.

Some advance planning can help maintain physical distancing when you are running errands, travelling, attending appointments or other events, or working in shared space.

The following song is a wonderful tool to help teach children about physical distancing in a fun way.

Listen to Morgan Livingstone CCLS read “If You Can’t Bear Hug, Air Hug: a book inspired by social distancing”, by Katie Sedmak. With audio description of illustrations for blind and vision impaired children.

Disinfect frequently touched surfaces and objects, including door handles, fridge/freezer doors, light switches, desks, counter tops, sinks, toilets, taps, gadgets, and your child’s toys and books.

Cover your mouth and nose with a cloth face covering when you:

  • are in enclosed public spaces like public transport and shops; or
  • cannot maintain social distancing, even if you are outside.

People may have COVID-19 without developing any symptoms, or may be infectious in the days before symptoms develop.  Wearing a cloth face covering helps protect the people around you from infection, in the event that you unknowingly have the virus.  It is not designed to protect you from other people.

Cloth face coverings should not be worn by:

  • Children under two years old – they are a potential suffocation hazard and very young children cannot handle them safely.
  • Anyone who has difficulty breathing or is unable to remove the cover unaided

Some retinoblastoma survivors have noted wearing a cloth face covering causes difficulty or anxiety that may lead them to avoid places where one is required. Reasons given include:

  • Foggy glasses restrict already limited vision, at a time when physical distancing limit the assistance people are willing to give.
  • The material reduces an already restricted field of vision.
  • The sensation of the covering over nose and mouth triggers PTSD relating to the anaesthesia mask after years of EUAs throughout early childhood.
  • The face covering draws attention directly to the eyes, causing anxiety in survivors uncomfortable about the appearance of their eyes (prosthetic or real).
  • An unstable prosthetic eye due to radiation damage of the socket requires cleaning and adjustment that is difficult to do without touching the front of the face covering.

Additional exemptions are stated by countries and jurisdictions that mandate the wearing of face coverings. These include people with physical and mental health disabilities, and children below a certain age. Check specific exemptions with your relevant authority, and any exemption paperwork you may require.

Do NOT buy or use face masks intended for healthcare workers. Surgical and respirator masks remain in critical short supply around the world and must be preserved for frontline healthcare workers and other keyworkers.

If your child is neutropenic, ask your physician what is appropriate. If anyone in your household is exhibiting symptoms of COVID-19, they should wear a mask at all times to protect other family members.  Ideally, both caregiver and child should wear a mask if one is needed for either person.

Like medical face masks, cloth face coverings must be made, worn and handled correctly to be effective and safe. Handmade cloth masks, scarves, bandanas and other similar reusable coverings may increase the risk of transmission if not made properly and used correctly. They must be used with extreme care.

  • A cloth face covering should snugly cover your chin, mouth and nose while allowing you to breathe comfortably, and tie securely behind your ears or head.
  • Do not touch the face covering or your face while wearing it.
  • Wash your hands with soap and water or hand sanitizer before putting on the covering, and before and after removing it.
  • Use the face covering only once before washing it.
  • When removing the covering, handle only the tie straps. Do not touch your eyes, nose or mouth, the front of the covering, or the part that was in contact with your mouth and nose.
  • Store used face coverings in a plastic bag until you can wash them.
  • Wash your hands, open your washing machine, and then handle the face covering, to reduce the risk of contaminating the door handle.
  • Place the covering directly into the machine without touching anything else.
  • Wash at the highest temperature possible and dry thoroughly.
  • Clean any surfaces the face covering has touched after being used.

Cloth face coverings are one possible layer of protection, in addition to social distancing, shielding and handwashing. They are not a substitute. Continue to stay 2 metres, or 6 feet from the people around you, and practice strict hand hygiene when wearing and handling the covering.

Listen to Morgan Livingstone CCLS read “Lucy’s Mask” by Lisa Sirkis Thompson, with audio description of illustrations for blind and vision impaired children.

World Health Organization PSA on wearing face masks

3. What Do I Need To Know About the COVID Test?

Most countries now operate a community access COVID testing system.  Access to testing services may be prioritized for individuals who

  • have symptoms of COVID-19
  • have been exposed to the virus but have no symptoms
  • work in a key role or live with a keyworker
  • are vulnerable to the virus
  • care for someone who is vulnerable to the virus
  • are about to receive medical care that cannot be delayed or deferred until after the pandemic.

If you or your child develops any symptoms of COVID-19, a test needs to be done. Do not go to the hospital or doctor’s office. Call your doctor or check with your local health authority for advice about where you can access COVID-19 testing.

If you or someone you live with tests positive for COVID-19, follow the home isolation and retesting instructions issued by your local health authority.  If you do not receive any instructions or guidance, ask your doctor for guidance.

It is recommended that everyone in the home isolate for 14 days, even if they have not been tested, or they test negative.  If another member of the household develops symptoms during this time, the 14-day isolation period for all unaffected residents in the home should begin again from the first day of symptoms.

Most hospitals now operate a pre-procedure COVID-19 testing system.  The testing timeline for adults and children is slightly different:

Adults may be tested 72-48 hours before the procedure, and will be asked to isolate at home after the test – no errands or interaction with people outside the home. This ensures, as far as possible, that the test result remains true on procedure day.

Children may be tested the day before the procedure or on arrival at the hospital on procedure day. This is done to reduce the restrictions placed on children’s social interaction and learning, and because very young children may be less able to take steps to limit their exposure.  Some evidence suggests children have a minimal role in transmission of the virus, and therefore allowing their socialization poses a low risk in the days before a procedure.

Different hospitals have different systems in place that may change in response to the current COVID-19 outbreak or degree of control locally.  Follow the testing instructions given to you by the admitting hospital for this procedure – they may differ from previous instructions issued by the same hospital.  If something is not clear, ask your medical team for clarification before you leave home for the hospital.

If the test is positive, your treating team and hospital will determine urgency of the procedure and/or treatment in relation to the risk of exposure to other patients and staff.   Assuming the infection has no complications, any delay to medical care would likely be limited only to several weeks of home isolation.

There have been cases of children with cancer testing positive for COVID-19.  Thus far, there has been no data from affected countries to suggest that children receiving chemotherapy will fare any worse when they have tested positive.

The COVID-19 test involves taking a sample of mucus from the back of the throat and nose using a long Q-tip swab.  This can be slightly uncomfortable and may make you cough, sneeze, or gag.  But the procedure itself is very brief.  The test may be difficult for children, and it can help to prepare them in advance by

  • practicing comfort positions
  • sitting still (games like Statues help with this)
  • taking deep breaths to become calm (blowing bubbles can help with this)
  • holding their breath for a few seconds

In the following two videos, Jennifer, a child life specialist at Mayo Clinic, and Isla, a young patient at the Royal Children’s Hospital Melbourne, explain about COVID-19, personal protective equipment and the swab test from a healthcare worker and child’s perspective. Both are great preparation tools for children.

Ask your medical team or child life department if they have any resources specific to the medical centre that you can use to help prepare your child.

4. How Is COVID-19 Affecting Retinoblastoma Care?

Like all places where people gather, hospitals have implemented physical distancing and other measures to keep staff, patients and their families safe during the pandemic.  These measures include:

  • Limiting the number of personnel in the building.
  • Blood tests carried out at GP surgeries or in the home.
  • Personal Protective Equipment (PPE) for medical professionals.
  • Increased cleaning of patient spaces between consultations and procedures.
  • Telephone or digital consultations for patients who do not need to be present for physical exams or treatment.

Some of these measures reduce capacity in delivering face-to-face care such as EUAs and eye clinic exams. Each consultation takes longer as the professionals don and remove PPE, rooms are cleaned before the next patient can be seen, and fewer staff are present in clinic to deliver care.

Retinoblastoma teams are working hard to ensure the children in most need continue to receive necessary surveillance eye exams and treatment.  In the process, some children with the most stable, inactive tumours may experience postponed EUAs.  As a parent or relative, this can be very hard to understand, and it may cause considerable anxiety.  But it is important to remember that doctors will usually only delay or cancel planned EUAs when they are very confident that a child’s cancer is completely under control.

If a child’s eyes are stable, and doctors feel they may be able to tolerate an office exam, an eye clinic appointment may be proposed as an alternative to delaying EUA.  If your child’s EUA is postponed and a clinic exam is not suggested, ask the ophthalmologist if this is an option.

If transition to an office exam is planned for your child, ask the medical team and the child life department what support they can provide to help your child prepare and cope well during the first visit.

Retinoblastoma treatment and surveillance is critical cancer care.  During the pandemic, it is important to attend all scheduled appointments, unless you, your child or someone else in your household has COVID-19 symptoms.   In that instance, you should follow the advice of your treating team.

Remember that only extreme measures within a hospital will limit the provision of paediatric cancer services. If this does impact your child’s care, follow all guidance from your medical team, and discuss with them any possible alternatives.  Be patient with them and understand they will be facing an exceptionally challenging situation. Try to stay grounded in the present.  Focus on what can be controlled right now, and what you can do to reduce your stress and tension as much as possible.  Worry and speculation will only induce more anxiety and deplete your coping resources.

For general updated guidance on COVID-19 and childhood cancer, visit

The following video from CCLG was made in May 2020, based on global research of COVID-19 incidence in children with cancer.

5. How Can We Stay Safe Traveling to Treatment?

Retinoblastoma patients have to travel to large urban centres which may require long distance driving, flying and being in crowds. Mitigating these risks as much as possible is advised.

Driving or taking the train poses a lower risk of virus exposure than flying. Angel flight and similar mission organizations avoid the crowds of commercial air travel, but the risk is not entirely eliminated. Wash your hands and your child’s hands frequently, or use hand sanitizer, whether travelling on public private or mission transport.

The following video explores ways in which air travellers can reduce the risk of virus exposure. Please remember that children under 2 years old must not wear a face covering in any circumstance as this poses a serious suffocation hazard.  Dr. Mike Hansen specialises in internal medicine, pulmonary disease, and critical care, and has cared for patients with COVID-19.

Driving to your hospital the day before and staying overnight will be safer than attempting a long round-trip in a single day when you are already stressed from the EUA or clinic experience. Driving straight to the EUA will leave you with fewer emotional and physical resources to support yourself, your child and your partner during the day, especially if the EUA brings difficult news.  Children and parents cope best with stress and make the best healthcare decisions when well-rested.

Also, it is important to consider the risk of an accident resulting from driving tired and stressed, with potentially cranky children.  A significant proportion of serious, life-changing and fatal road traffic accidents are caused by driver fatigue.  An accident will also burden the already-stretched health care system.  This is one key reason drivers are asked to make only essential journeys during COVID-19 spikes.

Your hospital may have a specific list of approved hotels at which patient families can stay during the pandemic. Check with your medical team before booking. If rooms are not available at the hospital’s designated hotels, ask the medical team to advocate for your family, to ensure you can travel safely and without additional stress.

If you are free to choose your accommodation, call the hotel and explain your situation at the time of booking.  Hotels are desperate for business at this time, and the staff will likely go out of their way to assist you.

Try to book a kitchen-suite or a room with a microwave, so you can bring your own pre-prepared food and heat it up, rather than eating in the restaurant with other guests.  Alternatively, order room service or take-out food wherever possible.  Bring some cleaning products and blitz clean the hotel room when you arrive for added peace of mind.

Public health authorities have differing policies about the number of parents who can accompany a child to medical care, and the length of time a family must isolate before and after travel to hospital.  Policies may change in response to local outbreak and control of the virus.

Ask your medical team for clarification about any policies covering your hospital and home area, well before you travel.  If you find they are problematic for you – for example, if you have sight loss and need a sighted guide, or you need the emotional support of your partner or another person, ask the medical team to advocate for a practical solution.  Your family’s mental health should not suffer further strain.

6. What If We Can’t Travel To Medical Care?

If your treatment centre is in another country or a significant distance from your home, consider whether transferring care to a closer centre is possible.  This may reduce your exposure risk and the length of time you need to quarantine before and after medical care.  As well as potentially reducing the emotional and financial cost of travel to distant care.

Continuity of expert care is important for children with retinoblastoma.  Before transferring, discuss any transfer plans with your child’s medical team and the centre closer to home.  Ask for their guidance, recommendations, and support, based on your individual situation.

If you do transfer care, even if only temporarily, do all you can to ensure the doctors from both centres collaborate to support continuity of care.  Retinal and scan images, reports and other medical records can be shared electronically, but you will be required to give permission before this takes place.

Recognize that communication may take longer at this time as medical professionals and their administrative support teams are stretched.  Many are working different hours, and working from home wherever possible.  Email may be a more effective communication tool than telephone and voicemail messages.  Try to be patient as you wait for responses.  Everyone is finding their way in unprecedented times.

Two whimsical plush characters stand next to one another on a caramel coloured leather footstool in front of a matching sofa covered in cushions of varied natural colours. Both plushes have horizontal striped bodies of alternating colours, big round eyes and a zip mouth. Sita on the left is about one third taller, and has five protrusions from the top of its head that look like flames, each coloured pink, white and light orange. It has small pink round feet and butterfly wings, its body stripes are pink and light orange, and its face is light orange, with a light blue spot in the centre of its forehead. Its mouth is unzipped, holding a piece of rainbow coloured paper. On the right, Flint’s stripes are coloured chocolate and latte, with a latte coloured face and chocolate coloured hands and feet. A pirate patch covers the left eye, and two caramel coloured horns curl gently towards one another, the left one slightly longer than the right.

Worry Eaters, Sita and Flint Junior.

7. How Can I Support My Child?

Things we can’t see can be scary for children.  People they trust don’t know what is happening, their usual routines may be disrupted, and their young imagination knows no limits.  Children cope best when they feel able to ask questions, and their concerns are acknowledged.

Explain about the virus, how germs spread, and the purpose of good hand hygiene to prevent transmission.  Children are more likely to follow directions when they clearly understand why they are being asked to do something, and that it helps protect themselves, the people they love, and other vulnerable people.  They will also feel more empowered to “fight” the virus when they know what to do.

This Colouring book and activity resource from St Jude Children’s Research Hospital teach children about COVID-19, and what they can do to stay safe and help prevent transmission.  The activity resource includes puzzles, quizzes and colouring.

This ”COVIBOOK” picture book from Manuela Molina provides basic information on coronavirus and the importance of handwashing, and invites families to talk about their emotions arising from the situation. The book is currently available in 25 languages.

WE C Hope Child Life Specialist, Morgan Livingstone, provides advice on helping children cope with masks and anxiety in this back-to-school guide for parents, focusing on four key steps of play, practice, preparation and patience.

Remember it’s OK to tell your child “I don’t know” if you can’t answer their question.

These activities for isolating with children may help keep children motivated and entertained when you are confined to home for an extended time.  The 40 suggestions include novel ways to stay in touch, fun learning, crafting and creating, active play, and connecting with nature.

Consider giving your child a Worry Eater as a special friend to help them – and you – through this worrying experience.  Talking about worries can be difficult, but your child can write or draw their worries and zip them up safe inside the Worry Eater’s mouth.  These delightfully whimsical creatures are a beautiful bridge between the bright fantasy world of childhood and the reality of heavy human concerns.

A parent’s recognition of the child’s worries, knowing what to do with them, and how to offer support may be more complex. Morgan Livingstone CCLS prepared a Parent’s guide to help with every step of the process.  Learn more about Worry Eaters, and download the guide.

If you are feeling creative, you can make your own Worry Eater by following this helpful video created by Child Life Specialist Jocelyn Leworthy,

Doing all you can to reduce your own stress will also help to calm your child.  Children take their cues from the words, actions and emotions of the people they look up to.  In this uncertain time, it is especially important to invest in your own self-care to reduce the tension you carry in body and mind.

8. How Can I Take Care of Myself?

The physical separation and uncertainty wrought by COVID-19 can be hugely challenging and stressful for both adults and children, with significant risks to mental health and relationships.  When we reduce stress, we are more able to think clearly, process information, make rational decisions and healthy choices, and support ourselves and our children through the experience.

Creating calm when we are already stressed and anxious is not easy. Identifying some strategies when we feel calm, and practicing them so they become familiar and natural, can help build up coping skills to face the difficult times more effectively.

Try some of these 45 practical approaches to help calm both body and mind.  You are more likely to use self-care tools when they are most needed if you have already practiced them, prepared, and have any necessary supplies to hand.  Consider specifically how you can protect your mental health during isolation, from eating, exercising and sleeping well, to being truly present with the people in your life.

We Are Stronger Together

Everyone is feeling the strain through this pandemic. Families and survivors are navigating medical care and the wider world with added layers of uncertainty and changed – often less – support.  Medical professionals put themselves on the frontline of exposure to ensure effective care continues, challenging systems and stretching their own emotional resources to do the very best for their patients,  families and colleagues.

COVID-19 will be a major part of our lives for some time yet.  But by doing all we can to limit our exposure, to take care of ourselves and one another, together we will make our way to the other side of both retinoblastoma, and the pandemic.  We are stronger together!

A shallow round tray is filled with glittering gold sand. The word PEACE is spelled out in many different shells, sea stars and pieces of coral, and the entire piece is finished off with several shells and sea stars decorating the top and bottom.

Abby’s shell project created an oasis of calm.

About the Author

Abby’s father was diagnosed with bilateral retinoblastoma in Kenya in 1946. Abby was also born with cancer in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy in infancy.

Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child and the desire to help many in developing countries.  After receiving many requests for help from American families and adult survivors, she co-founded the US chapter to bring hope and encourage action across the country.

Abby enjoys listening to audio books, creative writing, open water swimming and long country walks.

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