How do I cope with the diagnosis?
LCH can be difficult to diagnose and can be mistaken for other things. You may have been afraid that your child has a serious form of cancer and feel relieved that LCH is likely to be curable. You may feel angry that it wasn’t picked up earlier. You will probably feel confused as you won’t have heard of LCH before and worried and scared about what it means for your child.
The consultant and the rest of the medical and nursing team are there to help you through this very difficult time. They will explain the disease and the treatment your child will need.
It is very likely at this stage that you will not take in much of the information you are given. You may be in shock and find it hard to function as normal. Don’t worry if you have not asked all of the questions you meant to. You will have plenty of opportunities to do so later. Quite often, parents feel overwhelmed by the enormity of what has happened and cannot deal with anything else at this time.
As parents, being able to have even a few hours alone together to get used to the news and to talk about what has happened, before starting to tell everyone else, can be very helpful. If you are a single parent dealing with this news, it is helpful if you have a close friend or family member with whom you can share your worries and fears.
Telling friends and family can be emotionally difficult, and also takes a huge amount of time. It may help to tell one family member or friend and ask them to ring round others. Some parents also set up a webpage on one of the specialised websites such as Caringbridge or Carepages . This means that the latest information can be quickly passed on to friends and family who desperately want to know what’s happening, while not taking up all your time and energy having to repeat everything. It also gives people an easy way to let you know they care, through leaving messages in the guest books. Despite your best efforts, you will probably still find the telephone rings constantly. Don’t feel bad about using the answerphone. Let people leave messages and call them back if and when you want to.
How do I get the information I want?
When you are worried about your child and meeting a doctor that you may not know very well, it is easy to forget what you meant to ask, and what you have been told. If you can, try to take notes when you attend the main meetings with the consultant. It might be better to take a friend or relative along with you, as they might be able to pay more attention to some of the discussion and take notes for you. It is often the case that you will remember different pieces of information and you may have different questions or concerns. Write down any questions beforehand, so that you don’t forget them, and make sure you know whom to contact if you have any more questions, or urgent queries.
How do I listen to and talk to my child/their siblings about this?
A child of any age will notice a tense atmosphere and hushed conversations. It is very important that you talk to your children about what is happening. What you actually say to your child and their siblings will depend on their age. For younger children, it may be enough to say that they have some bad cells and the doctors are giving them some medicine to make the bad cells go away.
Older children and teenagers may want to know all that you know about their illness and may well have been with you when you were told the diagnosis. Being open and honest with them and talking together with the consultant about their questions will help you all to deal with the diagnosis. It may also be helpful for them to talk privately about their worries with members of the medical team, such as the doctor, social worker or psychologist. Some children may consider themselves mature enough to make their own decisions regarding their treatment and should therefore be involved.
Siblings may feel ignored and side-lined due to your child’s illness. Their lives have changed a lot due to their sibling’s illness and they may start to feel resentful about all the attention their sibling is receiving.
They may also be extremely worried and upset to see what their sibling is going through and it can raise difficult questions in their minds. You will need to give them opportunities to ask these questions and bear in mind that they might find it easier to talk to another adult (close friend or family) as they may not want to upset you.
There are many things you can do to help your family get through any difficult times during treatment. Some suggestions that have helped other families are:
• You and your partner spend time individually with your other children.
• Make sure that when your ill child receives presents from visitors, you even things up by giving something to your other children.
• Try and keep discipline consistent, even if it means relaxing things a little for everyone.
How do we deal with the treatment?
Parenting a sick child can be a very difficult experience. While it is good to keep things as normal as possible, worries about infections and the physical effects of the chemotherapy can make that impossible. How you change what you do depends on you and your family, on how your child is reacting and on advice from your doctors. For example, if your child loses their appetite, you may find that you are not so strict on table manners. Likewise, it may be fine for your child to attend nursery, while another family will prefer to keep them away from large groups of children.
If your child is at school or nursery, you should talk to the staff as soon as you can. You could also write to them with the facts about your child’s illness and ask that they pass on the information to other members of staff and parents of your child’s classmates. This is particularly important if your child is immunosuppressed, as you will need to be told if anyone who is in contact with your child develops chicken pox, shingles or measles. Your child may be assigned an outreach / community nurse from the hospital who can meet with staff at your child’s school or nursery to explain more about the disease and what they need to be aware of. This is important, as you will need to rely on the school or nursery to recognise when your child is very tired or ill.
Having a child with LCH can at times feel like a full-time job all by itself – just keeping track of medications, arranging and attending hospital appointments, getting test results, and generally making sure your child is getting the best treatment.
As well as the time spent dealing with hospital appointments and related tasks, the emotional trauma can make it hard to keep up with all the usual everyday jobs and work. Don’t be shy to ask for help – friends and family are often grateful to be able to do something concrete, so ask them to make a meal, do the ironing, mow the lawn, pick up the prescriptions. There may also be organisations that can help, such as local charities that will offer support or services such as doing your shopping. CLIC Sargent provides social workers and community young adult workers to support patients and their families, so ask for a referral in your hospital or contact them yourselves.
There are variations in what your local health service may offer. Some areas offer children’s community nurses (or paediatric home nursing teams) who will come to your house to take blood tests, change dressings which will save you a hospital trip. Your local pharmacist may be able to supply some of the less specialised medications, on prescription from your GP, which can be more convenient than using the hospital pharmacy. There may also be a ‘shared care’ arrangement with a doctor in your local hospital so that you can go to a closer hospital for blood tests, chemotherapy or if your child gets an infection.
Your child’s appetite may be affected by the chemotherapy and steroids and can change a lot depending on where they are in the treatment schedule. If you are worried about your child’s nutrition, talk to your medical team who will be able to advise you, or refer you to a dietician.
During the period of treatment you will have ups and downs. Although the first shock of diagnosis will fade and you will feel that at least action is being taken to deal with the illness, worries about your child’s progress and prognosis will come back from time to time, particularly if things do not go according to plan. It can be difficult to maintain the stability of your child’s home environment and minimise the impact on your family. Help and support from close family and friends, online support networks or your community group can all help to keep your spirits up. Doing fun activities as a family can help distract you and give you all a break from the worry and stress.
Treatment can range from just the initial biopsy or surgery in some children, to 6 months or even 2 years chemotherapy in other cases. It is helpful when you are given some idea of what treatment is planned and how long it might carry on for, so that you can try and organise your lives to cope with this situation. Talk to your Consultant about this but keep in mind that it may need to change depending on your child’s response to treatment.
What happens at the end of treatment?
Even though the treatment is stressful, many parents find the end of treatment difficult. Some parents have said they felt the disease had only been kept at bay while the drugs were being given. When treatment ends, it can feel as if the ‘safety net’ has been taken away, so you feel more worried about the return of symptoms. This uncertainty can be eased a little by the regular follow-up that your child will receive and by talking to your medical team about any concerns you have.
If the disease recurs, known as reactivation, most patients will again respond well to treatment. Your consultant will discuss the treatment options with you. Reactivation occurs in about one third of patients who had disease in more than one system/site but reactivation is rare in most other patients.
What resources are there for sibling or family support?
Families should be able to gain support from the group of professionals who work with their child’s consultant. They are known as a multi-disciplinary team (or MDT) and usually include nurses, social workers, play therapists and psychologists. Many centres also run patient, sibling and parent support groups.
Your GP will be kept informed by the hospital, but it is also useful to keep him or her up to date yourself. They can be a useful source of support for the whole family as he or she may be able to refer you for specialised support locally if needed.
Counselling can be useful for you and/or your children. Your GP may be able to refer you to a counsellor, or a child psychologist if required. ‘Relate’ provides counselling for couples, which can help to mitigate the strain that can be placed on your relationship with your partner.
There are a number of different charities, such as CLIC Sargent and Barretstown that offer holidays for families with children with serious diseases.
It is not always easy to find the help you need and you may need to ask a few people before you find the right support for you. As well as talking to your GP, try talking to the medical team at your hospital or shared care hospital, your community nurse, paediatric oncology outreach nurse specialist or CLIC Sargent social worker.
You may find helpful national or regional support and advice on our Useful Links page or you may also like to join one of our facebook groups.
HistioUK – discussion or HistioChampions – celebration
Where can I get financial support?
In the UK the NHS covers all medical treatment and tests free of charge. Prescriptions for medications are free for children. Having a sick child, however, inevitably puts additional financial pressure on families (travel, parking, loss of income etc.).
Some children may qualify for Disability Living Allowance or Personal Independence Payment. Clic Sargent has information on their website about some benefits, parental leave and flexible working at www.clicsargent.org.uk. You can also contact the disability centre or the Citizens Advice Bureau for further information.
It is vital that you talk to your employer to explain what is going on and find out what they can provide in terms of flexibility.
A carer’s allowance may also be available. This is means tested, so depends on your income. For further information, talk to your outreach nurse or social worker.
CLIC Sargent offer grants and can apply to other charities to help with the additional financial costs, such as unpaid leave from work, after school care for siblings and travel. More information on these grants can be found on their website, or through your social worker.
How do I find other parents?
One of the real difficulties for parents of children with a rare disease, such as LCH, is being able to talk to other parents, who have been through, or are going through the same experience as you. Your local medical team may be able to put you in touch with other families who have been affected by LCH
HistioUK have a number of multimedia opportunities to meet other patients and families affected by the disease. Facebook Histio Champions
Please be advised that all the information you read here is not a replacement for the advice you will get from your consultant and their team.
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