Helpful ideas

Accommodation

It is important to remember that when your child has been diagnosed with a brain tumour, she or he may be immediately transferred to a specialist hospital. This hospital may be a long distance from home. It is not always the first thing on a parent’s mind but it is important to find accommodation near to the hospital (if the hospital cannot provide it). Travelling each day is not always an option if the distance is too great. Quite often, parents/carers will be allowed to stay with their child overnight but usually there is a room for just one parent. In addition if the child is in intensive care there may not be a room available. There is often accommodation near to the hospital set up by charities, for example, Ronald MacDonald or Rhys Daniel Trust where parents/carers/family can stay for free. A nurse should be able to give further information on accommodation for parents and families.

Finance

Living expenses can be high if a long hospital stay is likely. Clic Sargent is a charity that does sometimes give financial support to parents/families during this time. Often hospitals provide a discount scheme for families using the hospital restaurant/canteen.

Travelling to hospital at short notice

Sometimes a child undergoing treatment will need to be urgently admitted to hospital because of a need for antibiotics, platelet, blood transfusion or fluids. It is a good idea to keep an overnight bag packed for both parent/carer and the child for when such an occasion arises.

Medication

When a child is admitted to hospital because of the side effects of treatment it is useful to have a written list of current medication the child is taking and the dose. Usually, this is one of the first things a parent/carer will be asked for. It is also a good idea to take along a small amount of each medication as occasionally a hospital will not have a particular drug and the pharmacy may be closed. Some hospitals allow parents/carers to administer medication to the child. Also, a child may need a certain sized needle for their portacath. It is a good idea to keep a spare one with you in case it is not the usual size the hospital uses.

Questions to ask

It is a good idea to think about and write down questions well in advance of a visit to the oncologist or registrar. Often questions will occur over a period of time and can sometimes be forgotten on the day of the appointment.