Care and mobility considerations
Care
Older children undergoing treatment are likely to have more care needs than younger children. This is because older children 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 support and practical help from their parents related to both treatment and the disease. 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;
- Ensuring oral drug treatments are taken as prescribed, despite side effects;
- Monitoring their child for the side effects of treatment – this includes monitoring for signs of infection and easy bruising;
- Protecting their child from infection during periods of immunosuppression;
- Encouraging their child to eat during periods of stomatitis (sore dry mouth) and providing mouth care;
- Providing an appropriate diet for the child when immunosuppressed;
- Emotionally supporting their child through their illness e.g. dealing with hair loss/time away from school/ being different from peers.
During treatment their child is likely to have periods of being immunosuppressed and be unable to go out in public. 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. Older children may also require such help due to severe fatigue. Those who have had intensive CNS therapy may also have problems with dizziness and sleepiness.
A very small number of children with CNS involvement will require additional care because they have developed severe side effects mostly related to CNS directed therapy. Examples include:
- Myelopathy – damage to the spinal cord by drugs – numbness, tingling or difficulty moving are likely symptoms. Problems may include difficulty walking or using the hands for everyday activities. This is rare.
- Peripheral neuropathy – numbness or tingling are common symptoms and may make using the hands difficult due to numbness. This is rare.
- Very severe tiredness – may be called ‘somnolence syndrome’ in the medical evidence- the child sleeps all the time.
- Acute cerebellar syndrome – difficulty balancing when walking or difficulty walking at all are likely symptoms. This is rare.
- Fits (5-10% of children having intrathecal chemotherapy will experience fits as a side effect). Child may need to take anti-epileptic drugs. The parent may need to manage fits if they cannot be controlled with antiepileptic medication.
- CNS therapy may lead to severe ongoing neurological problems including learning difficulties that persist in to adult life.
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 general effects may reduce the ability to walk normal distances, exercise tolerance is likely to be much reduced in all children because of these:
- Chemotherapy treatment
- 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 are best obtained from the treating paediatric oncologist or haematologist or the specialist nurse on the hospital team.
Examples of effects include:
- Myelopathy – damage to the spinal cord by drugs – numbness, tingling or difficulty moving are likely symptoms. Problems may include difficulty walking or using the hands for everyday activities.
- Peripheral neuropathy – numbness or tingling are common symptoms and may make walking difficult if the feet are affected by numbness.
- 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.
