18 Questions About COVID-19 and Retinoblastoma
Saturday March 21, 2020 – edited by Abby White
People around the world are feeling anxious about the coronavirus pandemic. We understand the concern is especially acute for parents of children with retinoblastoma, and survivors who have chronic health conditions and second cancer diagnosis.
Below, we answer questions we have received about the virus – we hope this information will be helpful. It has been prepared in collaboration with medical professionals who treat children with retinoblastoma (paediatric ophthalmology and oncology), and our child life specialist, Morgan Livingstone. We thank them very much for their input at such a busy time in their clinical practice.
If you have any concerns about your health, please contact your child’s retinoblastoma specialist or your oncologist. They should be informed of the situation in your country, and be able to give you individual advice.
1. What is COVID-19 and why is it so serious?
Coronaviruses (CoV) are a family of viruses that cause illness ranging from the common cold to Middle Eastern Respiratory Syndrome (MERS) and Severe Acute Respiratory Syndrome (SARS). Coronavirus Disease COVID-19 is a new strain, first seen in humans in Wuhan City, China in December 2019.
Coronaviruses spread through droplets when people cough or sneeze. The droplets can be inhaled by other people in close proximity. Or they stay alive on skin and other surfaces, and can be transferred by hand, particularly when someone touches their face.
Common signs of infection include a persistent dry cough, fever, shortness of breath, or flu-like symptoms. In severe cases, infection can cause pneumonia, severe acute respiratory syndrome, and kidney failure.
There is currently no effective treatment or cure for COVID-19 acute respiratory disease, or vaccine to prevent it. The virus is spreading rapidly and is a serious global health risk because it is a new disease in humans and people do not yet have immunity to it.
When a person is infected with a virus for the first time, their immune system learns to recognise it and develop a defence so it is well prepared for subsequent infections. When enough people in the population have been exposed to the virus – either by having it or being vaccinated against it, and become immune, they provide a degree of protection for the people around them who have not yet had the infection or whose immune system does not work properly. This is called “herd immunity”.
Because so few people in the world have had COVID-19 and developed immunity to it, there is currently no natural defence to help disrupt the chain of infection and slow the spread of disease. To allow the virus free rein to transmit and build up herd immunity would cause many vulnerable people harm in the process. This is why managing the public health response is currently such a challenge for governments and health agencies around the world.
The best way to prevent spread of infection is to avoid exposure to the virus, and protect others if you have symptoms. Many countries have introduced social distancing measures to slow transmission of the virus, save lives and help relieve pressure on medical resources. The goal is not to eradicate the virus, but to flatten the curve, so fewer people are infected and need medical care at the same time.
This is a rapidly evolving global situation. It will be very important to follow the public health guidance issued in your country of residence, and provided by your individual health care team.
Encouragingly, current evidence indicates that the vast majority of COVID-19 cases appear to be mild, and affected healthy children are mostly asymptomatic. Most retinoblastoma patients, except those receiving chemotherapy, are happy and thriving, and should not be negatively affected by the virus.
2. What can I do to limit exposure?
Wash your hands frequently with soap and water for at least 20 seconds, and teach your children good hand hygiene. See our Parent Guide for guidance on teaching kids independent handwashing skills.
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.
Employ social distancing measures, and avoid contact with people you know to be unwell, even if they have only mild symptoms.
Clean your home regularly, taking care to disinfect frequently touched surfaces and objects, including door handles, light switches, gadgets, and your child’s toys and books.
Avoid touching your face, and help your child to do the same – particularly their eyes, nose, and mouth – with unclean hands. Read our parent guide to limiting face touching for guidance.
Cover your sneeze or cough with a tissue, then throw the tissue in a bin. Try to do the same for your child, and help to teach them the same skill if they are old enough.
3. Does chemo increase the risk? If so, what types?
Having chemotherapy does not increase the risk of catching COVID-19. However, children who are immunosuppressed could have worse outcomes if they have the virus because their body will be less able to fight off the infection. But this is true for “flu” too. We have no data yet about COVID-19 in this population – we don’t have children receiving chemotherapy testing positive and showing either “good” OR “bad” outcomes.
Children having Intra-Arterial Chemotherapy (IAC) do get neutropenic. If your child is receiving chemotherapy of any kind (e.g. IA, intravitreal, systemic), to be safe, they should be considered at risk of immunosuppression, and increased susceptibility to the effects of COVID-19. Limit exposure by keeping your child at home, practicing good hygiene, and having all members of your household follow social distancing guidelines as much as possible.
Social distancing and hand washing are vital – and what families of children on therapy will be doing already. Seek advice immediately if you or anyone in your household comes into contact with someone with confirmed or suspected COVID-19, or develops symptoms.
4. Is the risk limited to potential delayed EUAs?
Is the risk that EUA or treatment may be delayed if the child gets sick, or are the effects of infection more dangerous because of the chemo?
If your child develops upper respiratory symptoms, they need to be tested. Do not go to the hospital or doctor’s office. Call your doctor for guidance about where testing should be done. If the test is positive, the treating team and hospital will determine urgency of the EUA and/or treatment in relation to the risk of exposure to other patients and staff.
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 do any worse when they have tested positive.
Recommendations for EUA and treatment scheduling are best made by the team taking care of your child. In general, necessary EUAs should be kept, unless otherwise advised by the treating team.
5. Are retinoblastoma survivors at higher risk?
I had retinoblastoma and my child had treatment but is now in remission. Does that increase the risk of severe effects if we get the virus?
Most retinoblastoma survivors recover fully from treatment that temporarily suppress the immune system, and will not be expected to have any increased risk from the virus due to their treatment history. It will be important to discuss your concerns with your doctor who is familiar with your individual medical history and any current medical conditions.
Any individual with a long term health condition or weakened immune system, and people in their household, are advised to stay at home as much as possible to limit exposure.
6. I had a second cancer. Am I at increased risk?
A person’s risk for the virus depends on the type of cancer, the treatment received, and how long ago treatment ended. People who have a higher risk of serious illness from COVID-19 infection include those who:
- are receiving cancer treatments that can affect the immune system, such as chemotherapy, immunotherapy and antibody therapies. or who have had such treatment in the last 3 months;
- have had stem cell or bone marrow transplant in the last 6 months, or who are currently taking immunosuppressants;
- have certain types of blood cancer that impair the immune system, such as chronic leukaemia, lymphoma and myeloma.
If you, or a member of your family are in one of these groups, it is vital that all family members in your home minimize social interaction and practice good hygiene to reduce your risk of exposure.
If you have been in close contact with someone with suspected or confirmed COVID-19, call your oncologist or follow your country’s local guidance for seeking COVID-19 related health care. Tell the person you speak with about the cancer and the treatment received.
7. Is Public Transport Safe?
Most retinoblastoma patients have to travel to large urban centers which may require flying and being in large crowds. Mitigating these risks as much as possible is advised. One option is to drive rather than fly, or take the train.
Try also to limit the number of caregivers traveling with your child – better only one parent is exposed than both. Wash your hands and your child’s hands frequently, or use hand sanitizer, when travelling on public transport.
8. Should we consider flying Angel Flight?
We fly to our treatments with a commercial airline because I am legally blind and there is no public transport alternative. Is it more or less safe to fly in small planes with a mission organization like Angel Flight? Should we consider this?
Angel flight and mission organizations like it are a good option, if available. It does limit exposure to larger crowds, which is a consideration. But it is not absolute. There are countless cancer patients in the same predicament who will have to use commercial carriers. Always practice good hygiene. There will be some risk with either option.
9. Should we wear masks when in public?
Face masks are probably the most visible symbol of the pandemic. Media outlets feature photographs of people wearing masks in public because they grab our attention and seep into our psyche far more than an image of someone washing hands. Face masks play a very important role in clinical settings such as hospitals, and physician-directed patient healthcare. But there is very little evidence of widespread benefit from their use outside of these clinical settings.
There are two different types of face mask – surgical face masks, designed to protect others from the wearer, and respirator masks, designed to protect the wearer from infectious patients. Face masks can be an effective barrier against transmission of infections through saliva, mucous or phlegm, but wearing a mask is no guarantee against infection.
For example, viruses can penetrate the eyes, which is why the public are advised to limit face touching and medical professionals caring for hospitalized patients also wear goggles. Face masks must be worn correctly, changed frequently, removed properly and disposed of safely in order to be effective.
Surgical masks are recommended for patient and family caregiver when a patient has an infectious disease or severely compromised immune system. They will provide little benefit to healthy people simply going about their daily business. A serious shortage of both surgical and respirator masks is developing in healthcare settings around the world, and members of the public buying masks they don’t need makes that situation worse for frontline health workers.
If you and your child are immune competent, there is no need to wear a mask. Health officials in multiple countries have been stating this. Leave the mask for those who are in need. 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 to protect other family members. Ideally, both caregiver and child should wear a mask if one is needed for either person.
10. What if I get sick but my children seem fine?
I am an only parent of two children, one of whom is receiving systemic chemo. What should I do if I get sick but my children seem fine? Everything is based on a magical “other person” in the home helping out. What do you do when you really don’t have that support?
If a caregiver becomes sick, everyone in the household will be subject to quarantine as well, including the child with cancer. So no hospital appointments will take place, even if a healthy caregiver were available to accompany the child. Fortunately, most quarantines are limited to 14 days, which hopefully means EUAs will not be delayed more than 2 weeks.
It will be important that you stay in touch with your doctor and follow their advice, as well as guidance for self-isolating at home. As you continue providing care for your children, handwashing, regularly sanitizing your home, and wearing a face mask will be vital to reduce their risk of infection.
11. What should I do if my child has symptoms?
Seek medical advice immediately if your child develops a persistent dry cough, fever above 37.8°C / 100.04°F, shortness of breath, or other flu-like symptoms, or if they have been in contact with someone known to have COVID-19. It is vital that you stay home unless your child needs urgent medical care.
Inform your treating hospital, so they can arrange testing and tell you how this should be done. If you are already in transit to the hospital – whether travelling to a routine appointment or urgent care, you must call the facility before you arrive, so they can make appropriate arrangements for care and to protect staff and patients.
Try to stay as calm as possible. Remember that your child will take their cues from you. They will feed on your distress, but the calmer you are, the less fear they will have, and the more able they will be to cope with the symptoms and medical experience.
12. What happens to treatment if my child gets sick?
Everyone says talk to your doctor, but the doctor won’t tell me anything. It’s like we have to wait until it happens to find out, but the anxiety is too much. Two weeks isolation doesn’t seem like a long time, but it that’s 2 weeks past a due EUA where treatment was needed, it could get bad, right? And how long after infection could we expect to be cleared for EUA? I’m scared my baby will get it and end up losing the eye we’re putting her through so much to save. I need some reassurance it won’t all go wrong.
Unfortunately, there are no guarantees. Be proactive in limiting exposure and practicing good hygiene. Encourage all those around you to do the same you help protect your family and your child.
Be encouraged that children at this time, even those on chemotherapy, do not seem to be having severe disease. If you are proactive in limiting exposures, the odds of you or child getting COVID-19, and being impacted by it, are small.
Contact your team immediately if your child tests positive or you are concerned about symptoms – of coronavirus or related to retinoblastoma. They will determine urgency of any scheduled EUA/treatment relative to disease and the risk posed to hospital, other patients and staff.
13. Should we cancel treatment or follow-up visits?
It is important to attend all scheduled appointments, unless you, your child or someone else in your household has COVID-19 symptoms.
Hospitals may seek to limit risk of exposure to vulnerable patients and their families posed by travel to medical appointments. Measures may include offering telephone or digital consultations for patients who do not need to be present for physical exams or treatment, or blood tests carried out at GP surgeries or in the home. Talk with your medical team about what may be possible.
14. Does an enucleated eye increase the risk?
I’ve heard that having an enucleated eye increases the risk of getting coronavirus, because the socket is more sensitive to infections and people touch their eyes more often – Is that true?
No! There is absolutely no truth to this.
15. How can I stop my child touching their eye?
My child frequently touches his eyes and the area around them, especially when he feels sore after treatments. I’ve seen adverts telling us not to touch our face to reduce the risk of infection. Does my son touching his eyes increase his risk, and how can I stop him doing this? At 18 months, he’s too young to understand the risk and to reason with him.
It is understandable and age appropriate for a young child of 18 months to touch his eyes and face often, especially after treatments. 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 post treatment. However, it is important to have plans in place to reduce touching around the face and eyes as much as possible.
First and foremost, even while taking precautions by self-isolating, you must increase handwashing. You can transform this routine activity, and teaching it, into a fun sensory experience, with special soaps, bubbles and music. Learn more with our parent guide to teaching kids handwashing.
Visit our Limit Face Touching Guide for suggestion 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.
16. What happens if the doctors get sick?
What happens if the doctors who treat Rb start to get sick? There are so few of them with expertise. What precautions are they taking to look after themselves and prevent their own infection so they can continue looking after our kids?
Medical professionals are taking extra precautions to limit their own exposure, practicing good hygiene and social distancing as much as possible. Patient families have an important role to play in limiting exposure to your health care providers. By staying negative, and following guidance if you have symptoms, you help to protect the medical team so they can keep treating children with retinoblastoma. Be proactive, follow public health advice, and disclose upper respiratory symptoms, fevers, etc. BEFORE travelling to the hospital.
If a member of your medical team is diagnosed with COVID-19 and you have not seen them within two weeks of their diagnosis, you are unlikely to have been exposed to virus. If you are worried about the implications for immediate ongoing care, contact your medical team, to discuss your concerns.
17. How can I help reduce my child’s anxiety?
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 and the people they love. They will also feel more empowered to “fight” the virus when they know what to do.
This picture book teaches children about COVID-19 in very simple terms, and the importance of handwashing to prevent transmission.
Remember it’s OK to tell your child “I don’t know” if you can’t answer their question.
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.
WE C Hope Child Life Specialist, Morgan Livingstone, prepared a Parent’s guide to help with every step of the process. Learn more about Worry Eaters, and download the guide.
18. How long can we expect this to continue?
There’s a lot in the news about when it will peak. As a parent with a child in treatment, looking at how far we still have to go, and how bad this could get, that concerns me.
The more we do to contain exposure at this time, the better off we will be. COVID-19 is not going away. The virus may not be any worse than the flu. The problem is the current lack of immunity in the population, the number of patients being affected at once as a result that is straining health care resources, and the implications for those who are high risk. In 1-2 years, COVID-19 will be one of the many seasonal “cold viruses”. By then, the majority of people will be immune due to prior exposure or vaccination (once developed), so the impact will be much less.
In the meantime, we need to help protect one another everywhere by following all public health advice as outlined above. Even from a distance, we can lift one another up through this unprecedented experience, and we can emerge stronger, perhaps more deeply connected and resilient than before.