Daily life rules
Please keep this in mind when you’re at home
If your child vomits more than 30 minutes after taking a tablet or capsule, you do not need to give it again.
If your child vomits within 30 minutes after taking a tablet or capsule, always check the vomit:
If you see the entire tablet or capsule, give the medicine again.
If you are unsure, consult with the treating physician or nurse specialist.
Never give medicine drinks again.
If your child vomits more than once and/or if you are concerned, consult your physician.
- Preventing infections
Normal hygiene measures suffice at home. This means above all that everyone should wash their hands frequently and meticulously. Ordinary soap does the job just fine. Normal hygiene also suffices when preparing food, that is washing your hands thoroughly with soap and using a clean dishcloth, tea towel and towel every day. Avoid direct contact with adults and children with an infectious disease. Also ask the people around you to warn you if there is an outbreak of any kind of illness.
If your child has a low white blood cell count, it is best not to take public transport during peak hours to avoid crowded, poorly ventilated public areas.Recognizing infectionsBecause of the disease and its treatment, your child is more susceptible to infections. The white blood cells are reduced, so your child is less able to fight infections. The fungi and bacteria that occur in and on every person's body can also cause infections. That is why most children are given antibiotics during treatment. Still, there is the possibility of your child getting an infection. It is important that you recognize an infection as soon as possible and that it is treated without delay.
Symptoms that may suggest an infection:Fever (a few hours > 38°C or once > 38.5°C)
Coughing
Rapid breathing
Diarrhea
Stomach and abdominal pain
Headache or difficulty bowing the head
Rash, blisters or sore spots
Earache
Sore throat
Sores or pain around the anus
Painful urination
If your child has a fever or other signs of infection, please contact your treating physician or clinical nurse specialist.
If you are worried or uncertain, never hesitate to call. The golden rule is: follow your parenting gut-feeling.
Childhood diseases mainly occur in young children. "Chickenpox or scarlet fever is doing the rounds at school," you will have heard or said at some point in time. If your child's immunity is compromised, certain (childhood) diseases can have a severe affect on them. This is especially true for chickenpox.
ChickenpoxChickenpox, as well as shingles, is caused by the chickenpox virus. The virus nestles in the nasal cavity and in the vesicles (small blisters) of someone who has the illness. It is easily transferred by direct contact or by airborne droplets.
Chickenpox is contagious as from 2 days before the blisters break out until all the blisters have dried up. The disease usually starts 10-22 days after infection with 1-3 days of mild nasal congestion, fatigue, headache and reduced appetite. Then a rash appears, usually on the trunk first and then all over the body. The blisters occur on the skin and contain clear, watery fluid. After a few days the disease progresses along various stages: red spots, blisters and scabs. The scabs drop off anywhere between 5 and 20 days. The blisters themselves do not leave scars but often itch. Scratching to relieve the itch can cause scars. Side effects include a few days (3-5) of fever, headache, loss of appetite, fatigue and swollen lymph nodes.
Children who have had chickenpox cannot get it again.
ShinglesShingles are caused by the chickenpox virus that remains 'dormant' in the ganglia nerve cells of those who have had chickenpox. When their resistance is reduced, the 'dormant' virus can kick in. Shingles are only contagious if you come into direct contact with them. It is not contagious when covered by clothing. Closely grouped blisters form in a clearly delineated area, usually on the abdomen or chest. Shingles can be very painful.
Ask your surroundings (family, friends, school, daycare, after-school care) to notify you immediately if someone has chickenpox or shingles.
What should you do after being exposed to chickenpox or shingles?
If your child has had contact with someone with chickenpox or shingles during the contagious stage (see above), call your treating physician or clinical nurse specialist immediately. Your child must receive an injection of antibodies within 48 hours of contact. These antibodies prevent infection or keep the disease at a milder level. If your child develops chickenpox or shingles despite the antibodies, immediately contact your treating physician or clinical nurse specialist again.
MeaslesIf your child has not yet been vaccinated against measles and has been in contact with someone with this disease, call the hospital. If your child has been vaccinated, you do not have to do anything.
Scarlet feverYou don't have to keep your child at home if there is scarlet fever at school or daycare. If your child develops scarlet fever, contact the hospital. Your child will then be given antibiotics.
Other childhood diseases and infectionsIf your child has been in contact with someone who has some other childhood disease, such as impetigo or stomach flu, or has signs of an infection, talk to your treating physician or clinical nurse specialist.
Appointment in the Máxima CenterIf your child has an infection and has an appointment at the clinic or day surgery, call in advance. We can then either reschedule the appointment or arrange for a separate room so that your child cannot infect other children.
Chemotherapy reduces the thickness of the mucous membranes of the cheeks, tongue, palate and gums. Your child can therefore easily get blisters and wounds in their mouth making it very painful to eat, drink, swallow and talk. Chemotherapy and radiation can also damage the enamel of teeth and so your child can get cavities. It is therefore very important that your child brushes their teeth well and that you look after your child's mouth.
Eating well and healthily helps to build healthy cells up fast again, ensures that your child can endure treatment better, and reduces the chances of infection. Furthermore, good nutrition gives your child more energy and strength, making them feel better as a result. The disease or its treatment can change your child's appetite and taste (you can read more about nutrition and cancer here). That is why the Máxima Center provides an appetizing, healthy meal or snack six times a day. You yourself can also prepare your child's favorite food at the Máxima Center. Good nutrition is also important at home, but try not to make food an issue.
HygieneWhen buying food products, take note of the use-by date (best-before date) and to freshness and quality. Keep foodstuffs with a limited shelf life such as meat, fish, milk and chilled meals in a fridge (40°F). Only use opened milk cartons, cheese, cheese spread, meat products and jellies if they are kept in the fridge. Dishes or leftovers that you want to keep can easily be cooled by putting them in a pot of cold water. Wait until a dish has cooled completely before putting it in the fridge. Make sure that meat, chicken, fish and eggs are well cooked. Your child is allowed to eat only freshly prepared snacks and fries (i.e. not food kept in food warmers or dispensers). Avoid foodstuffs containing lots of micro-organisms if your child’s resistance is low.
Your child must not eat:
(Half) raw meat or raw meat products
(Half) raw fish and prepackaged smoked fish
Raw and soft-boiled egg (yolk)
Raw milk (blue) cheese (however, soft cheese made of pasteurized milk, hard cheese and cheese spread are allowed)
Soft ice cream or milkshakes from a vending machine
Probiotics such as Activia, Yakult, Vifit or Actimel
Children who have had a stem cell transplant from a donor are subject to some additional rules. You are given those rules before the transplant and you can also find them here (in Dutch).
Tube feedingSometimes your child can find it difficult or impossible to eat normally, For example if your child is still very young, has a sore mouth, or if their taste has altered. Or if food is not digested properly due to abdominal pain and diarrhea. In these cases, tube feeding can help to keep your child in good nutritional condition. Together, you and the dietitian will decide what is most suitable for your child. Fluid nutrition is liquid foodstuffs that can be drunk in addition to or instead of meals. Tube feeding is liquid and is given via a tube. It is easily absorbed by the body.
If you have any questions regarding nutrition, your physician or clinical nurse specialist can refer you to a dietitian.
If your child has low platelets due to chemotherapy, their gums may sometimes bleed and they may be more prone to nosebleeds or bruising.
Bleeding gumsIce cubes or ice pops/popsicles can help with bleeding gums. If the gums continue to bleed, call the hospital.
NosebleedIn the event of a nosebleed you can do the following:
Have your child sit upright, preferably slightly bent forward and have them blow their nose well.
Then press your child's nose just below the nose bone with your thumb and index finger for ten minutes.
If this does not help, have your child blow gently again.
Then insert a piece of gauze (not cotton wool) dipped in xylometazoline (Otrivin®) 0.1% into the nostril.
Leave the gauze in for half an hour and then remove it with a circular motion. Wet the gauze if it is stuck.
If none of this helps, call the hospital.
Bruises and petechiaIf your child has many bruises and/or petechia (small blood dots), contact the hospital immediately. Your child may need a platelet transfusion.
Your child may develop red or sore buttocks due to chemotherapy. Try to keep the buttocks clean and dry, and protect them by applying a thin layer of Bepanthen. This cream is available at supermarkets or drugstores.
If your child’s buttocks start to become redder, contact the (wound) nurse. They can assess if it is necessary to use a more protective barrier cream. If your child wears a diaper, leave it off or open to allow more air to reach the area.
If your child develops sore buttocks, contact the wound nurse.
The wound nurse is available Monday to Thursday during office hours at 06-50006794 or via email at wondzorg@prinsesmaximacentrum.nl
After surgery, your child may shower starting 48 hours post-operation. Bathing or swimming is allowed only once the wound is healed, which usually takes about three weeks. If in doubt, consult the doctor, nurse specialist, or wound nurse.
Always contact the surgeon or wound nurse if:
The surgical wound doesn’t close properly or reopens.
The area around the wound becomes redder and the redness spreads.
The skin around the wound becomes more painful, warmer, or swollen.
There is increased discharge from the wound or around the stitches.
The wound reopens.
Your child has a fever above 38.5°C or has a temperature above 38°C twice.
After surgery, ensure your child changes positions regularly. Have them wear well-fitting, preferably seamless socks, and place a cushion under their lower legs to keep the heels free. Contact the wound nurse if painful or red spots develop.
QuestionsFor any questions, you can always reach out to the nurse specialist, treating doctor, or wound nurse via 06-50006794 or wondzorg@prinsesmaximacentrum.nl.
Your child may travel by public transport, except when their white blood cell count is low. In that case, please consult the nurse practitioner.
When coming to the outpatient clinic or day care unit for treatment, it’s best to travel by car or taxi. If your child needs to receive medication during the trip, there must be two adults in the car — one to drive and one to keep an eye on your child.
At the Máxima Center, all children from the age of 3.5 years are checked into the educational facility (EF for 'educational facility'). An EF teacher (consultant) will work with you and the home school to see how, during treatment, education can continue as best as possible and how your child and the class can keep in touch.
When your child goes back home, they will usually be able to attend daycare, elementary school or secondary education. This is important for your child's development. Just make sure the class teacher, mentor and school principal are aware of your child's condition. It is important that the school calls you immediately if there any infectious diseases doing the rounds at school.
In principle, your child may participate in all school activities (PE, swimming, school trips) unless their immunity is highly compromised or they have a shortage of platelets. If in doubt, consult your physician or clinical nurse specialist.
The school can obtain advice or support from the counselors of the EF or educational consultancy agency in your region. Go to www.ziezon.nl for an overview. The school can order information and borrow (digital) lesson kits from the Dutch Childhood Cancer Association (www.kinderkankernederland.nl) to provide classmates with explanations and help them to interact with your child.
Your child may go to school even if other children have a cold, but it’s best for them not to sit too close. Keep your child at home if there’s a case of chickenpox in the class and your child hasn’t had chickenpox. If you’re unsure, please don’t hesitate to contact the nurse practitioner.
If your child feels well, they are allowed to do all sorts of things. There are, however, some limitations that need to be observed and we have some important tips.
OutdoorsProtect your child from direct sunlight by having them wear long sleeves and a cap or hat and apply sunscreen with a high sunscreen factor (> 30).
SportsIf your child feels fit enough, they can play any kind of sport. But if they have a shortage of platelets, it is better that they avoid contact sports. If your child is fitted with a portacath or line, special rules apply. You can find those rules in the VIT brochure (in Dutch).
SwimmingSwimming in (tropical) pools, sea, rivers or lakes is allowed if:
Your child has a VIT and there is no needle in it.
If your child has a line, but only if the clip on the line is closed.
Please note: the next time the line is used, the cap at the end of the line must be replaced. Therefore, always tell the hospital or home care nurse that your child has been swimming.
With a PICC line, a punctured VIT or an IV, your child should not swim.
OutingsYour child is allowed to participate in activities and go on outings. They can also visit tourist attractions and the petting zoo. Make sure your child washes their hands thoroughly afterwards.
Only if your child has low white blood cells should they avoid crowded, public, poorly ventilated areas and busy public transport.
In some instances, restrictions apply after brain surgery; the treatment team will advise you in this respect.
VacationChoose a vacation destination in a country with good and easily accessible medical facilities. Your physician can give you a letter to take with you containing the most important information about your child's illness and treatment. You may have to go to a hospital in the vicinity of your vacation address for a check-up and/or to administer medication. Your child is allowed to travel by plane. After undergoing some types of radioactive testing or treatments, a “flight pass” is required. In some instances, restrictions apply after brain surgery; the treatment team will advise you in this respect.
Pets are fine, but don't let your child change the litter box or rabbit hutch.
Your child should not be vaccinated during or immediately after chemotherapy. Your child must wait six months after treatment before they may, in consultation with their physician, receive the vaccinations provided through the national vaccination program.