Care and mobility considerations
Care
Children over 10 undergoing treatment are likely to have more care needs than younger children for two reasons. Firstly they are likely to have more intensive treatments, being in a higher risk group, because of their age. This means a greater proportion of children over 10 could be expected to have severe side effects related to therapy. Secondly children aged 10 and over are likely to be substantially self caring – any help with personal care in this age group is likely to be related to their condition rather than immaturity.
Children of all ages are likely to require extra emotional and psychological support and practical help from their parents related to both the disease and its treatment side effects. In relation to treatment parents will need to spend time doing the following for any child undergoing leukaemia treatment -:
- Supporting their child through painful or distressing treatment,
- Caring for a central venous access device. Most children have central lines for treatment and blood tests. Lines must be kept secured, clean and dry,
- Ensuring oral drug treatments are taken as prescribed,
- Monitoring their child for the side effects of treatment such as fever indicating possible infection or easy bruising. Such monitoring is continuous, signs of infection or bleeding require urgent hospital review and possible admission,
- Protecting their child from infection during and after treatment,
- Encouraging their child to eat as taste and appetite are often affected, Diarrhoea, constipation and vomiting or nausea may also occur. Eating is particularly difficult during periods of stomatitis (sore dry mouth),
- Some children require nasogastric feeding, often for 10-12 hours over night for which the parents will need special training,
- Providing daily mouth care,
- Providing an appropriate diet for the child during therapy,
- Giving psychological and emotional support to their child (and any siblings) through their illness e.g. dealing with hair loss/time away from school/ being different from peers.
Immunosuppression is continuous during treatment but there are additional periods when the white cell count is especially low. Avoidance of crowded places is advised which may include shops such as supermarkets.
Episodes of severe fatigue may endure for many months related to chemotherapy treatment and anaemia. Younger children will require help with all aspects of self care and dressing because of their age and to ensure their central line is not disturbed. Older children may require help due to severe fatigue, dizziness or sleepiness related to CNS treatment as well as care of their central line.
Some children will require additional care because they have developed significant and sometimes severe side effects. Examples include -:
- Peripheral neuropathy – numbness or tingling are common symptoms and may make using the hands difficult due to numbness. The child may have difficulty walking if the lower limbs are involved.
- Tiredness which may be severe. The ‘somnolence syndrome’ where the child sleeps much of the time is a well described side effect of cranial radiotherapy and affects the majority of children who undergo this treatment. Its onset is between 1-12 weeks after the cranial irradiation and usually resolves within 4 months.
- Encephalopathy or fits: 5-10% of children having intrathecal chemotherapy will experience encephalopathy most commonly presenting as fits or a focal neurological deficit (stroke). The encephalopathy usually resolves within 48 hours but can have longer lasting effects. A persisting stroke may result in problems with strength and/or balance or if fits continue the child may need to take anti-epileptic drugs. The parent may need to manage fits if they cannot be controlled with antiepileptic medication.
- Acute cerebellar syndrome – difficulty balancing when walking or difficulty walking at all are likely symptoms. This condition tends to resolve in days or weeks at most; it is very rare.
- CNS therapy may lead to ongoing neurological problems which may be severe. These include learning difficulties that can persist in to adult life.
- Steroid treatment can result in -:
- diabetes which may need insulin,
- avascular necrosis of large joints such as hip and knee can occur and may ultimately lead to joint replacement. In the meanwhile, pain can limit walking and movement,
- Sleeping difficulties/insomnia,
- psychosis including mood swings, depression and insomnia,
- proximal muscle weakness making walking particularly up stairs difficult,
- vincristine can result in neurological problems such as foot drop and weakness, again hampering mobility.
- Regression to earlier stages of development can occur. Often young children go back to bed wetting, sometimes back to nappies. Wet nappies and bed need changing as soon as possible in order to prevent the chemotherapy toxins that are excreted in the body fluids from causing rashes and soreness. Sickness and diarrhoea are a regular occurrence, as are night sweats all of this means change of bedding and night clothes.
Equipment Used (Access) for giving Chemotherapy
It is essential that the following ‘lines’ & ‘ports’ etc and the sites of entry into the body are kept meticulously clean & hygienic in order to prevent infection & this is a time consuming task.
| Name | Access | Area of the body |
|---|---|---|
| Hickman Line | Venous | This type of line is tunnelled under the skin of the chest wall and inserted into the large veins in the neck. The end of the line is outside the skin about half way down the front of the chest. |
| PICC (peripherally inserted central catheter) | Venous | This is a long line inserted into a vein in the arm and threaded up to the large veins in the neck. The end of the line is outside the skin near the crook of the elbow. |
| Portacath/implantable port/port | Venous | This is also inserted into the neck veins but the end of the line is under the skin, usually of the chest wall. A small lump will be palpable under the skin and this is the chamber into which, drugs can be injected. |
| Peritoneal port | peritoneal | These catheters are usually inserted surgically and have ports underneath the skin of the abdomen. |
| Omaya reservoir | Spinal fluid | The reservoir is a chamber placed under the skin of the scalp, this communicates via a tube with the spinal fluid. This avoids repeated spinal tap procedures. |
Mobility
Severe fatigue related to either of the following may reduce the ability to walk normal distances and exercise tolerance is likely to be much reduced -:
- Chemotherapy treatment; or
- Anaemia.
Some treatments cause severe specific side effects that make walking very difficult or dangerous because of the risk of falls. Most of these effects resolve over time. Information on prognosis of disabling effects relating to treatment is best obtained from the treating paediatric oncologist or haematologist or the specialist nurse on the hospital team. Examples of effects are described above.
