THE CHILDREN'S BRAIN TUMOUR CHARITY

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Friends and Family

Cancer affects the whole family

People sometimes make the mistake of thinking that friends should instinctively know that they need help. (They are not mind readers!)

A diagnosis of cancer affects not only the child, parents, and siblings, but also grandparents, other relatives, and friends.  Some people naturally know how best to help you whilst others will struggle, not knowing what to say or do for the best.

Try to understand that people do care about you, you may simply need to tell them how they can best help you.

 

Your friends and how to help them help you

It’s okay to admit that you are not coping, close friends and family will understand the emotional strain

Show others how you and your child want to be treated. If they are over crowding you, or over indulging your children, tell them

You may find it upsetting and frustrating to have to repeat details about your child’s illness to family members and friends.

Ask one person to handle calls and questions or consider a daily blog post.

It can be helpful to ask one friend or family member to be the “point person” to share with people your needs – for example, getting the wash done or shopping for groceries

Your employers will need to be told about your child’s illness, they need to understand why you are unable to focus on work and need time off.

You may wish to ask your child’s doctor to write to your employer to explain the situation.

Sometimes when we get wrapped up in helping our sick child we forget to look after ourselves.

Don’t be shy of asking friends to help with meals. Most friends will love to be able to help

Friends can certainly help on this front. They could be picking up your children from school, looking after them during hospital appointments, or giving you a much needed break 

You’re allowed to be upset and angry. It is important that as well as looking after your child that you spend some time looking after yourself. Friends can help here.

Be honest with your friends and family. They will have some tough questions that need answering – in your own time. Honesty will help your friends build an action plan of help

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Your child's friends are really important

Your child still has the same needs as other young people – going to school, having friends, and enjoying things that were a part of life before their illness. You can help meet these needs by letting your child live as normal a life as possible.

Encourage your child to stay in touch with friends. Keeping contact is easier if your child can continue to go to school while being diagnosed and treated.

Try to encourage your child’s friends to come and visit them in hospital. Many children (and their parents) say that friends who have shared a cancer journey are more accepting and appreciate what your child has been through.

Children who have cancer need and like to be with others their age, and keeping up with schoolwork makes them feel good about themselves.

When children have obvious physical changes, such as hair loss, they will naturally worry about how their friends and classmates will act toward them, Help your child to think of ways to answer the awkward questions. 

Your child may need to know that many people, including children, are uneasy about a serious illness. These people may act differently or say hurtful or wrong things to someone who has cancer.

Talk with your child’s teachers about your child’s cancer, days missed, and any needed changes in activity. Teachers and other school staff may want to use this information to talk with the other students about what to expect when your child returns

You can do something amazing

Challenge yourself at a sporting event. 

Donate your birthday

Remember a loved one with a donation

Give a monthly amount

Make a one-off donation

Something Special Art Event for Joss Searchlight

Work with your local community and businesses.

Ask shops to have a collection tin

Talk to schools to hold non-uniform days

Deliver Christmas envelopes 

Help us at events

Fighting to make all brain tumours curable

Zach's Story

Zach was diagnosed with a rare brain tumour called Diffuse Intrinsic Pontine Glioma (DIPG) when he was just three years old. Joss Searchlight visited the family shortly after diagnosis.

Zach’s mum, said: “Zach didn’t speak very well as a toddler and when his right eye developed a squint he was given glasses and an eye patch to strengthen the eye” However Zach’s symptoms progressed and his parents were eventually given the worst news, that Zach had an inoperable brain tumour.

With no cancer treatment options available his parents agreed to Zach being part of a ‘clinical trial’. The aggressive drugs affected Zach’s immune system and his parents were distraught to be  told Zach was unlikely to survive more than 24 hours. Zach did survive, however his speech and memory were affected.

Zach was happy until his cancer progressed and no treatments were offered. Zach tragically died age 6

Joss Searchlight arranged for Zach to meet his hero ‘Diago’ at Nickelodeon World (A children’s interactive educational series on children’s TV). It was following this family holiday that his mum contacted our charity and said “Zach stopped speaking when we went to Blackpool completely and it hasn’t returned. As you can imagine he becomes really frustrated as he can’t communicate to us.  Obviously we feared the worst with the tumour but thankfully he has had two MRI over this period and the tumour remains stable”. Although the tumour was stable, doctors at Harley Street feared the swelling in Zach’s brain to be treatment related.

After much persistence with doctors and education authorities Zach was offered a place at a school for children with moderate learning difficulties and the wonderful opportunity to join their signing program. Zach was happy until his cancer progressed and no treatments were offered. Zach tragically died age 6.

Zach’s mum said: “A high percentage of children don’t survivor DIPG for more than a year. Zach has proven there are exceptions and his dad and I are very proud of the way he has coped with everything he has had to face.”

His mum would like to see more awareness and research into DIPG

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