THE CHILDREN'S BRAIN TUMOUR CHARITY

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Talking cancer

Dealing with a child's fear is never easy

Although survival rates for children diagnosed with cancer have improved dramatically, it's still a very scary thing, especially for a child.

In the last 30 years, the survival rates for children diagnosed with cancer have significantly increased from 30% to 80% percent. Treatment for side effects have improved. Children treated for cancer now have a better quality of life throughout childhood and into adulthood with fewer long-term ill effects.

A treatment team – doctors, oncology nurses, radiation & oncology specialists, rehabilitation specialists, dietitians, and social workers will help your family deal with the disease with as few ill effects as possible.

 

To help your child deal with fears and feelings you may wish to:

  • Assure your child that the cancer and its treatment are not punishments, they have not caused the cancer.
  • Encourage your child to talk about the cancer and cancer treatment. (Age appropriate ideas for talking with children are discussed by child psychologists in our support films)
  • Ask your children questions to get the conversation started. Family talks can help everyone feel less worried. Talking helps the whole family cope with the illness together. Some families set a regular day for their children to ask about their concerns. Children, like adults, have good days and bad days. Help your child feel part of normal life.
  • Tell your child that is it okay to feel sad and cry (and it’s okay for mum, dad, brothers and sisters to cry too)Scruff Torch facing left
  • Encourage activities to help your child feel more relaxed. Creativity activities such as painting, dancing or music can help your child to feel better.

It's Good To Talk

“The stress of having a devastating child cancer diagnosis is like a Coke bottle. You keep shaking it and shaking it and it’s going to go POP. You have to let the pressure out”

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Help Joss Searchlight find a cure for some of the rarest and hardest to treat brain tumours and give support to families

Childhood brain tumours are relatively rare.

Childhood brain tumours are thankfully relatively rare.

1500 children are diagnosed with cancer each year in the UK, of these, around 400 children are diagnosed with a brain tumour.

Most of the time symptoms that your child may show that cause you concern will not be due to a brain tumour.

However, it is important to talk to your doctor if you are concerned.

What are the Symptoms of a Childhood brain tumour ?

Symptoms of brain tumours can vary from child to child.

Symptoms can often mimic relatively minor childhood illnesses.

Common symptoms of brain tumours

Taking Your Child to a G.P if you suspect a brain tumour

If your child has one or more of the symptoms listed, or you are concerned, you should take them to see a Doctor as soon as possible.

Explain your worries about the symptoms being a sign of a possible brain tumour.

If your child is exhibiting two or more of the symptoms listed, ask the Doctor for an urgent referral, meaning  your child will be given an appointment with a specialist who can look into the cause of the symptoms.

Fighting to make all brain tumours curable

Poppy's Story

Joss Searchlight met Poppy in 2014 when Poppy was 13. 

Poppy had been diagnosed with a brain tumour (glioma) at only 14 months old. The brain scan revealed a huge mass the size of an orange. Twelve days post diagnosis Poppy had an 8 hours brain surgery. Her mum said “we were told there was only a 50/50 change we would get her back”

Typically, these tumours are slow growing, however Poppy’s tumour followed a very aggressive course – this was not expected by her consultants.The Glioma can then press and squeeze parts of the brain near the chiasm. This can lead to other conditions developing including hydrocephalus, problems with growth and development.

 

Poppy Gilder for Joss Searchlight

Poppy’s mum said “Poppy’s consultants managed to hold off radiotherapy until Poppy was 5 - there is now a high risk of damage to her brain & pituitary gland due to her age. She requires daily injections of growth hormones”

In January 2021 Poppy reached the milestone age of 18, an amazing achievement from the initial prognosis. Over the years Poppy has had 5 brain surgeries, 2 years of chemotherapy, 6 weeks of radiotherapy, over 70 MRI scans and countless other procedures. The brain tumour and treatment have taken Poppy’s sight in her right eye and left her with many other lifelong issues and some tumour still remains. However, Poppy is full of positivity and happiness and lives her life to the fullest.

Her mum recalls: “we were told that if they could get her to adulthood things would hopefully stabilise. The aim was to get her there with as little damage as possible. It seemed like a whole lifetime away and every birthday was a huge milestone. She did it!”

Poppy said: “It has been a rollercoaster for me, my family and everyone who has supported me over the years but I wouldn’t be here celebrating my birthday if it wasn’t for all the amazing people and my mom and dad who have been there every step of the way”

New research has now been developed to help children like Poppy. A biopsy of Poppy’s tumour was used in the research together with 113 biopsies from children’s brain tumours and tracked over a 5 year period. Poppy was fortunate to have such a positive outcome. Sadly, some children died as a result of the cancer treatments.

Read the latest research led by Poppy’s paediatric consultant Prof Andrew Peet

THE REALLY TOUGH QUESTIONS

As difficult as it is to talk about, sometimes the prognosis for a particular cancer maybe that it is untreatable or has reached a point where only palliative care is an option. 

Joss Searchlight can be there for you at this time and has specialist support workers that can help you with difficult conversations, planning, creating special memories and making sure your wishes for your child are communicated.

Every case is different so if your child has received a poor prognosis contact Joss Searchlight by clicking the link below.

Fighting to make all brain tumours curable

Children may find it hard to talk about their fears and may behave differently than usual. Some children become very loud or bossy, others may be quieter than usual, perhaps withdrawn. Your child may regress to behaviour such as sucking their thumb or wetting the bed.

Naturally, most parents indulge their poorly child, however setting limits for behaviour and activities is still important and even comforting to your child

Bear in mind that some medicines, e.g. steroids, can result in dramatic changes in behaviour. Many parents say their child became demanding and aggressive whilst on steroids.

Teenagers frequently complain that their parents try to protect them too much. Teenagers are at a stage in their lives when they are naturally trying to be their own bosses, but having cancer changes that and forces them to depend on you. When possible try to give them space.

Having open and honest conversations with your children will be difficult but there are ways to talk about cancer without being too frightening

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