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CARING FOR YOUR CHILD DURING CHEMOTHERAPY (Liberty Rose Trust)

USEFUL ADVICE FROM THE LIBERTY ROSE TRUST

CARING FOR YOUR CHILD DURING CHEMOTHERAPY

A High Temperature
Please make sure that you check your child’s temperature using a good quality thermometer, which can be bought from most large chemists. Follow the manufacturer’s instruction.

If your child becomes generally unwell and develops a fever, it may be due to an infection. If the temperature goes above 38 degrees please telephone your Oncology Centre for advice. Do not give Calpol/Paracetamol or Aspirin or any other medications without first checking with the ward.

Unusual Tiredness, Paleness or Shortness of breath
This may mean your child is anaemic and requires a blood transfusion. Please contact your Oncology Centre for advice.

Bruising or Bleeding
If your child develops nose bleeds, bleeding from the gums or unexplained bruising (i.e. other than small bruises children often get whilst playing) he/she may need extra platelets to help the blood clot normally. Please contact your Oncology Centre for advice.

Vomiting
If your child continues to vomit once you are at home or has difficulty swallowing or tolerating medicines or tablets, please contact your oncology centre. They may be able to prescribe some medicine or tablets to help with the sickness. Though in the early stages of intensive chemo none of the anti sickness drugs helped with Liberty and it wasnt until she dropped one of the chemo drugs that the anti sickness started to work

Any Other Problems
Cough diarrhoea, headache, tummy ache, rashes. Even children who haven’t had chemotherapy have all of these at some point. It often isn’t anything to worry about but the hospital may need to check them over. So please always telephone first for advice. Please don’t think that you would be wasting the hospital's time. If they feel your child doesn’t need a hospital visit, they may advice you visit your own GP.

MEASLES OR CHICKEN POX

When is measles catching?
For 2-3 days before and 4 days after the rash appears.

How long does it take or measles to appear?
10-15 days: This is known as the incubation period.

When is Chickenpox catching?
For 2 days before the spots appear and until all the scabs are dry.

How long does it take for Chickenpox to appear?
11-21 days.

How soon should my child be given Immunoglobulin after contact?
As soon as possible after contact, preferably within 1 day but up to 3 days.

How close does the contact have to be in order to put my child at risk?
Any contact indoors within the same room. If the contact is out of doors, then your child would have to have played closely with or have talked to an infectious person in order to be considered at risk. If you are unsure please contact us for advice.

How should I arrange for my child to get Immunoglobulin after contact with Measles or Chickenpox?
Telephone your Oncology Centre for staff to arrange for you to come in for it to be given. When arriving, please report to a nurse immediately in order to avoid contact with any other children who may be at risk.

If my child had Measles/Chickenpox before chemotherapy should Immunoglobulin still be needed?
A blood sample is taken at the time of diagnosis to determine whether or not your child has immunity, but still contact your centre for advice.

What happens during the incubation period concerning out-patients appointments?
Advice your Centre and do not mix with other children on the ward or at out-patients.

What happens if my child develops Measles or Chickenpox despite receiving Immunoglobulin?
If the disease is not prevented, it will at least be very mild and therefore, much less dangerous. Chickenpox can be treated with a drug called Acyclovoir but we prefer to prevent it if possible. Immunoglobulin is only partially effective in treating Measles, so prevention is even more important. Most children have been immunised against measles so it is now very rare.

What would happen if my child had contact with Measles or Chickenpox unknowingly, so failed to have Immunoglobulin and then went on to have the disease?
Chickenpox would be treated with Acyclovir. We may give Immunoglodulin to help cope with the attack of measles.

REMEMBER – If you are worried and unsure, please telephone us at any time for advice.

IMMUNISATIONS

It is important that your child does not receive any immunisations during their treatment for cancer. This is because some immunisations would not work properly if given to a patient receiving chemotherapy. Some live vaccines may actually be harmful.

Once your child has completed their treatment, usually they should not receive any immunisations for 6 months. This will, however, depend on the stage of immunisations that they were at before treatment started. We will discuss this with you at the relevant time.

Immunisations for Brothers and Sisters.
Brothers and sisters should continue to receive immunisations. However, they or any other member of your household should not receive the usual polio vaccine (usually given at 2, 3 and 4 months of age and again as a pre-school booster). Instead they need to receive a “killed” vaccine. This will need to be ordered in advance by your GP or Health Visitor, so it is helpful that you give them approximately 1 months notice. If you would prefer, we can contact your GP or Health Visitor for you. It is perfectly safe for brothers and sisters to receive all other immunisations.

HICKMAN LINES

The Hickman line is a silicone rubber tube which is inserted under the skin into one of the very large veins in the body. We are able to take blood samples and give drugs and blood when necessary without the need for repeated needles for your child. The tube can stay in place for up to several months, but some basic guidelines need to be followed. These will be explained to you on the ward, but we have written them down for you to keep in a handy place at home.

Please remember you can telephone the ward at any time you have ay worries or concerns.

The line should be clamped at all times on the thickened part of the line. If the line becomes unclamped, it will need to be flushed. Clamp the line immediately and contact your Oncology Centre.

If the line is accidentally severed or there is any leakage, clamp the line immediately. If the clamp has been lost, tie a knot in the line and telephone your Centre. The line should also be secured with either a skin fix dressing or pouch.

The area where the line enters the skin should be kept clean and dry. When bathing your child, make sure the water is not too deep and wash their hair separately to keep the area dry. Unfortunately, swimming is not allowed while the Hickman line is in and showering is not recommended.

When changing the dressing, make sure you have washed your hands before putting a clean dressing over the area where the line enters the skin. This should be done only if the old dressing is coming off, or has become dirty. If there is any discharge or reddening of this area, please contact your Centre immediately.

Your child will be given a protective bag to put around their neck into which the ends of the Hickman line will sit. This is to protect the line from being caught or pulled and the children feel they also have some added protection for their lines.

It is however very important that the bag is changed at least twice a week and washed at a minimum of 60 degrees to help prevent any infection, which can get inside the line. If you notice the bag visibly soiled at any time it needs to be changed and cleaned.

Do not tuck the line into a nappy or panties. If you feel you need any other added protection for your child’s line please ask the staff for advice.
We will give you a spare bag, but should you need a new one at any time please ask the Centre or Community Nurse.

If the lines come out, pressure should be applied over the site with a sterile dressing or hanky (this is a very rare occurrence).

Where possible, we would like to offer the opportunity to teach parents to flush their child’s line themselves.

The Hickman line will make your child’s treatment much easier and prevent a lot of painful needles. If however, you have any worries please telephone your local Centre.

MOUTH CARE FOR CHILDREN ON CHEMOTHERAPY

Good dental hygiene is always important and should continue throughout your child’s treatment. A healthy mouth is very important.

During treatment, your child will be at greater risk of developing a sore mouth. Because of this, you need to check your child’s mouth regularly and sometimes use mouth care preparations. The following information gives you advice how to do this.

Tooth Brushing
Good tooth brushing is essential to a healthy mouth. It should be done at least twice a day after meals, more if possible. Use a soft-bristled toothbrush especially designed for children. There are many toothbrushes for children available and these can be bought from the hospital pharmacy, shop or local chemist. Toothbrushes should be renewed every few months.

Please note – If your child’s mouth is too sore for a toothbrush, we can give you some small sponges.

Mouth Preparations
When your child is neutropenic or has a sore mouth, we use a preparation called ‘Corsodyl’ which is very effective in fighting bacteria and fungal infections. Corsodyl comes in different types of preparations and you can use the one you think is most suitable for your child.

  1. Mouthwash: this should be swished around the mouth after tooth brushing and then spat out. If your child finds the taste too strong, you can dilute it down with water.
  2. Toothpaste: use as you would ordinary toothpaste.
  3. Spray: spray gently around the mouth and then spit out.

Please note – if you are using ordinary toothpaste, rinse the mouth out well with water before using Corsodyl mouthwash or spray. Corsodyl can cause staining of the teeth but this can be kept to a minimum by normal tooth brushing.

Other preparations may be added to your child’s mouth care as directed by your Consultant and your nurse will explain these to you.

Sore Mouths
Please contact your Centre immediately if you notice any of the following, or if you are at all worried that your child may have a sore mouth.

  1. Your child complains of a sore mouth
  2. Your child refuses to eat or drink
  3. Your child complains that brushing their teeth hurts
  4. Your child’s gums bleed or ulcers appear
  5. You feel that your child has a sore mouth, e.g. mouth looks sore and red.

Please do not wait to see if your child’s mouth improves, it may not, it may get worse and cause serious problems.

Dentists
Your child should visit the dentist every 6 months whether having treatment or not. However, it is important that your dentist knows your child is having treatment with us and you must let him/her know. If your child is due for a visit to the dentist, or needs to see a dentist at any time, let us know and we can then talk to your dentist.

BUILDING WORK AND ASPERGILLUS INFECTION

Aspergillus is a fungus which is often present in old brick dust.

It can cause serious infection in a child who is receiving chemotherapy.

We, therefore, advise that no building work or demolition work should be carried out at home during your child’s treatment and for 6 months following the end of treatment.

If you are planning some work at home and are unsure if it fits in to the above category, please speak to a members of staff for advice. This should not be taken lightly as we have seen children lost to this infection, please please be carefull

HOLIDAYS WHILE YOUR CHILD IS ON TREATMENT: Information to Parents

During your child’s treatment, you may wish to take your child on holiday.

We advise against holidays abroad during active treatment as the unexpected may occur and lead to last minute problems.

Insurance can be difficult to obtain and hospitals in resorts are often not experienced in caring for a child with cancer.

There are clear risks in arranging these holidays whilst on intensive treatment.

Holidays in the UK may be possible during treatment, but there may be difficulties in arranging these well in advance as it is hard to predict treatment plans and blood counts.

We often suggest a short break of a few days rather than a long stay.

If on treatment for Acute Lymphoblastic Leukaemia, please try to avoid going on holiday during the Vincristine week.

Our main advice is to discuss any plans or dates with your child’s consultant BEFORE booking.

HOSPITAL COMPUTER AND HOSPITAL DEPARTMENTS

When your child comes into hospital as a new patient, his/her personal details are recorded on the hospital computerised patient information system. The details stored are his/her name, date of birth, address, GP, etc. He/she is then given a hospital number and a set of notes is sent to the ward/outpatients department.

From them on, information about any visits your child makes to hospital is then recorded on the system.

All departments and doctors will ask for further information about your child and this information will be stored in his/her notes.

Other organisations
If your child is diagnosed with a childhood cancer, his/her personal details will also be sent to the United Kingdom Children’s Cancer Study Group (UKCCSG). This group helps to keep the National Registry of Childhood Tumours.

The registration form asks for details as before and also for details of any congenital (present at birth) or relevant illnesses in your child, the child’s parents, and in any brothers or sisters. The form asks for specific details about the type of cancer your child has and when it was diagnosed.

If your child is entered into a clinical trial, we will ask for your consent and if you give it, information about your child’s treatment will be sent to the organisation running the trial. Your child’s medical records may be inspected by the organisation running the trial to analyse results and to check that the study is being carried out correctly.

All information collected about your child during the course of the research will be kept strictly confidential.

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