General care and mobility considerations

Care

Some children with neuroblastoma will develop care needs due to the nature and duration of their treatment. For example children with low risk and some with intermediate risk disease could be expected to make a full recovery within 6 months. Other children undergoing chemotherapy for intermediate risk neuroblastoma may have care needs related to the duration of their chemotherapy regimen. Children undergoing treatment for high risk neuroblastoma are likely to have significant care needs. Older children undergoing treatment are likely to have more care needs than younger children for two reasons -:

• Firstly they are likely to have more toxic treatments, being in the high risk group because of their age. This means a greater proportion of children over 18 months could be expected to have severe side effects related to therapy because they are having more intensive treatment.
• Secondly children aged 5 and above are likely to be substantially self caring - any help with feeding, toileting and mobility in this age group is likely to be related to their condition rather than immaturity.

Children may be immunosuppressed and unable to attend school for prolonged periods requiring care and protection from infection at home. Preschool children, who normally attend nursery, will need to be cared for in a safe environment rather than nursery to reduce risk of infection.

Children of all ages in any risk group 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 chemotherapy treatment -:

• Supporting their child through painful or distressing treatment.
• Pain management - either chronic, disease related or acute, treatment related.
• Ensuring any oral drug treatments are taken as prescribed, despite side effects.
• Caring for a central venous access device/central line - in most cases a ‘Hickman’ type line – the site must be kept clean and the line regularly flushed, care must be taken not to dislodge the line when washing and dressing.
• Monitoring their child for the side effects of treatment – this includes close monitoring for signs of infection and easy bruising or bleeding.
• 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.
• Many children will require supplemental or complete enteral feeding during their treatment; this may be either via a nasogastric tube, or a gastrostomy.
• Some parents will give subcutaneous drug treatments to the child.
• Emotionally supporting their child through their illness e.g. dealing with hair loss/time away from school/ being different to peers.

Following stem cell transplant 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 debilitation and severe fatigue.

Some children will require additional care -:

• Peripheral neuropathy related to chemotherapy (particularly vincristine). This can cause ‘foot drop’, which can limit mobility or numbness or tingling, which may make using the hands difficult due to numbness. This is rare but may affect personal care, toileting ability, feeding and dressing.
• Para-spinal neuroblastoma that has caused neurological problems in the legs and affected continence.
• Terminal illness.

For some children treatment will not be successful, and they will require palliative and subsequent end of life care

Mobility

Severe fatigue related to chemotherapy treatment and anaemia may affect walking for periods during treatment but this is not a continual effect over 6 months or more. Children with para-spinal tumours may have neurological problems making walking difficult or impossible due to paralysis. Some children will recover walking ability and others will not. If the condition is reported as permanent by the treating oncologist indefinite awards in respect of mobility are recommended. In other cases where ability to recover is unknown review after 2 years, 2 years is recommended as significant recovery, including learning to walk again, may occur. If walking is not achieved in the first two years indefinite awards are recommended.

A small number of children may also experience peripheral neuropathy as a side effect of chemotherapy which can also affect walking. Full recovery is expected in most of these cases, the best source of evidence on mobility problems and ability to recover is the treating oncologist or specialist nurse.