No one is ever prepared to hear that their child has a life-threatening illness.  For most parents the first few weeks are a blur. It can be completely overwhelming trying to come to terms with the diagnosis and what it means for your child to go through treatment. It is especially difficult for those faced with a very rare disease like paediatric chordoma.

You may have trouble believing what is happening. You are likely to be crippled by fear at times. You might want to research and read up on everything you can about the diagnosis, or you might want to only hear what the doctors tell you.  All of these reactions are normal.

One thing that unites all parents is the strong instinct to maintain as normal and positive a family life as possible. However, it can be extremely challenging to achieve this as family schedules and routines get turned inside out after a child’s diagnosis, and you are likely to be in hospital for extended periods. At the same time as trying to build new, predictable routines for your child around their treatment, you are also trying to manage your own stress and shock and digest a lot of information about your child’s diagnosis.

This can all take its toll on parents. Physical symptoms can merge with emotional ones, and you may feel anxious a lot of the time and find it difficult to sleep or eat. Anger and guilt are common. Unfortunately, these painful and unpleasant feelings cannot be avoided and you’re likely to have them at various times following your child’s diagnosis.

Words in bold are explained in a glossary.

Drew Barker-Wright

Things that can help you to cope

Things that can help you to cope with these difficult feelings and emotions include:

  • Knowing that you’re not responsible for causing your child’s cancer
  • Discussing your fears and anxieties with the team caring for your child. The staff at the hospital, including social workers, specialist nurses and doctors, can listen and support you
  • Leaning on family members and friends, taking up their offers of help
  • Taking care of yourself – try to eat well, rest when you can, and take breaks from the hospital
  • Trying not to bottle up your feelings – when you can, find a space to weep or cry, scream or shout
  • Talking to people who know about chordoma – read more about how to connect with others in our Support section


Symptoms & diagnosis


How is chordoma treated?