Every cancer diagnosis is difficult, but few things are more harrowing and frightening than hearing your child has cancer. It will come as a devastating blow to parents, siblings and other family members and you will likely have difficult emotions and unanswered questions. But there is help.
Helen Lythgoe is a Children’s Lead Macmillan Nurse who works within the community in Lincolnshire. Here she shares the seven most common questions parents ask when their child has cancer and offers her advice.
1. How do I tell my other children their brother/sister has cancer?
Your child may have already been told about their cancer by their doctor but deciding how to tell their siblings will be wrought with emotion.
“Your child’s illness can have a huge impact on the whole family: you may see your other children less, they may have to stay with relatives and they may be upset that their brother or sister is in hospital or getting more attention. My advice is to be as honest as you can. The more information a child has, the easier it is for them to understand what’s going on.”
Don’t be scared to talk to your child about what’s happening and plan what you’re going to say beforehand, says Helen. It’s often more difficult for a parent because of all the emotion around the diagnosis, however, children are very matter-of-fact about things. Once they know what’s going on they’ll generally carry on as normal.
It is important to explain things in simple terms and in a way that shows what it means to them – for example why their brother or sister may get more attentionor why their parents are spending a lot of time in hospital away from home. It’s often better to explain what’s happening bit by bit or when there is a change, as this helps to build up their understanding so it’s not so overwhelming.
“There are many different terms that can be used to describe cancer such as: ‘tumour’, ‘cancer’, ‘leukaemia’ or ‘poorly blood’. This can often be confusing to children, therefore stick to one term you feel comfortable with. It is often better to use the word ‘cancer’and be clear what it means, as children may hear the word cancer used in a different context and worry about it.”
2. How will I cope financially?
People don’t always think about the financial impact of cancer, and naturally it’s the last thing you want to think about.
“Money worries are a huge issue for parents with a child who has cancer as they may have to give up work if their child is in hospital a lot or is too unwell to go to school. Often, employers give parents time off when the child first falls ill, perhaps as compassionate leave, not realising that they may need to be off work for months. For example, a child with leukaemia may need treatment for up to three years.”
If a parent is working, they may be eligible for flexible working so they can change their hours or work from home but still maintain their income. Helen advises parents to speak to their employer about this and look at the terms in their contract as some employers offer sick or compassionate leave if your child is ill.
3. Will my child lose their hair?
Depending on their treatment, it is a possibility. But remind them that their hair will grow back after treatment. If possible, find fun hats and bandanas for your child before their hair starts to fall out, advises Helen.
“When hair does begin to fall out, it often does so quickly and in clumps so brushing hair may help to speed this up, as children can find it annoying to have hair everywhere.”
Some children will want a wig. Your nurse can give you information on where you can get a wig and charities like the Little Princess Trust provide wigs.
“Wigs can be hot and uncomfortable to wear so in my experience most girls will wear hats and bandanas on a daily basis then wear a wig for a special occasion. Make sure you put sun cream on your child’s head if they lose their hair as it will be more sensitive.”
4. What side-effects will my child have from treatment?
As well as hair loss, parents often ask about other side-effects. A common question is around how steroid treatment will affect their child and how to deal with it.
“Dexamethasone is a steroid, used as part of the treatment for acute lymphoblastic leukaemia (ALL) and it can cause behavioural changes, affect a child’s sleep patterns and make them ravenous. Sometimes a child will want to eat continually, especially unhealthy junk or processed foods. It is okay for a child to have some junk food but it is it is best to alternate with more healthy snacks. It’s best to plan for snacks throughout the day, try to keep at least an hour between each. It is also often helpful to have some snacks by the bed in case your child wakes up hungry in the night.”
Steroids can also make a child’s behaviour change. This can range from being very emotional, to not wanting to share, to having a tantrum if they don’t get their way.
“Remember your child is ill but they still need boundaries and discipline as before. It’s important that both parents and relatives have a united front on what their child can and cannot do, as it will make it is easier for you and your child in the long run.”
5. When will my child be able to go back to school?
Returning to school during treatment can help a child socialise, be with their friends and ‘get away’ from the cancer.
“Depending on your child’s treatment, and if they are well enough, I would encourage parents to send their child to school for a short period. School is likely to be tiring for your child and it is best to plan a flexible return on a part time basis and build up depending on how your child copes.”
Parents are often worried that if they send their child back to school he or she will pick up an infection. Unless you have been advised otherwise by your child’s doctor, if your child is well enough, it’s okay to send them to school, says Helen. There are no hard and fast rules when a child should or shouldn’t attend school, however if your child is having intense treatment and is very neutropenic(impacting the white blood cells) it’s probably best to avoid school for a few days.
“Your child’s nurse will usually be given a care plan and can help arrange a meeting with the school so they can discuss how to keep your child safe and how to explain the situation to other children. For example, they will explain why your child may be allowed to have a snack in class or eat different foods. I often go into schools if a child there has cancer to explain terms such as chemotherapy and dispel myths, explaining that you can’t catch or spread cancer and people don’t always die from it.”
6. Can I take my child on holiday?
“I am often asked by parents if they can take their child with cancer on holiday. I’d encourage this as holidays (in the UK) can be important to provide a sense of normality and provide precious family time for you, your child and any siblings.”
If your child is still having treatment you need to get approval from your child’s consultant. You will also need to plan your holiday for when your child is least vulnerable, such as in between cycles of chemotherapy treatment. Usually your hospital will give you a letter which will explain your child’s condition and treatment plan. Your nurse may also send a letter to a hospital near to where you are going with this information in case your child does need treatment while on holiday.
“I advise parents that if their child has a Hickman line (a central venous catheter in the chest) they shouldn’t go swimming and if they go to the beach the line should be well covered so they don’t get sand in it. If your child is going to a farm, make sure they wash their hands to avoid them getting an infection. Generally, holidays abroad are out, while your child is on treatment.”
7. How can I make sure my child maintains his/her friendships?
It can be hard for a child to maintain their friendships during cancer if they aren’t at school or are too ill to see their friends.
“I’m often asked by parents what they can do to help with this. Explain to your child that their friendships may change but do your bit to keep them alive too. Invite your child’s friend to the hospital or home. Social media, facetime or Skype are all good ways to keep in touch. Get your child to write cards or letters to their friends, or a diary or story of their experience for when they go back to school.”
In many cases, the child’s school will encourage their classmates to send cards, but parents should also embrace technology too. There have been cases where the child’s friends or classmates will link up to them by video phone, such as Skype or Facebook to talk to them.