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Newly Diagnosed

OK, so you've just found out your child has Neuroblastoma and you've came home from the hospital and Googled it right? You will probably be in partial shock, yet you will be trying to learn everything there is to know about Neuroblastoma in 4 hours flat. Stop. Breathe. Try not to panic. Use this website to walk you through our step by step guide. Right now, no matter what you do or don't know, your child is in the right place and treatment will be commencing regardless of your knowledge. It's natural to want to know everything there is to know about the disease your child now faces, but you will not be able to absorb everything and you will soon find there is a lot of conflicting information available on the web. You want to hear the words 'don't worry, it will be alright' but all that will register with you is scary survival statistics and every story of loss. I want to reassure you right now that there are MANY happy endings, and they are too busy living their lives to be posting about the disease they once had! You will learn everything you need to in time.

Prioritise. You will probably need to make arrangements for practical things such as childcare for any siblings and pet care but other than that most things that were once very important wont be so important now. Now all you need to think about is being with your child and getting your head around the fact that your child has cancer.

Let us know you're there. FAN operates on Facebook in real time and you can instantly access our online support group consisting of hundreds of Neuroblastoma families. We have public and private forums on there, and an extended network of other sources of help that can all be accessed instantly. You can of course contact us via email or phone, details of which are under the contact section. However you choose to contact us, please make sure that you do, we are here to help.

By now you will have met your consultant. Some are better at explaining things than others, and some are more specialised in Neuroblastoma than others. Which ever consultant you have, they all talk to each other for second opinions so rest assured at this point in treatment the NHS will make sure your child has the best plan they can offer. There are always other people who can talk you through something, again and again if necessary. They will have handed you the 'flow chart', the piece of paper with all the arrows and abbreviations on it that might as well be Greek. Don't panic. I don't know why they still hand this out, perhaps its to occupy your mind? Who knows, but rest assured no one understands the flow chart to begin with, and usually not before the 100th time of reading it. Keep it handy, you will come back to it.

Keep notes. If you have a Dictaphone or can borrow one, then do so and take it with you to meetings. (if you don't, we can send you one). You will find it very useful to write down a time line from day 0 and keep track of all the procedures such as blood and platelet transfusions and chemo, pain relief, antibiotics and other drugs. Believe it or not, you will be asked by staff for input on this and although you needn't worry, they will be able to find out through their own records, it can often make you feel worse to say "I don't know", and can in fact help lessen the feeling of helplessness if you can answer questions about your child's treatment. Many people have found this very therapeutic also, and add to the notes in a diary style. This can also help the child in the future, to remember and understand what happened to them.

You will probably have already met your Clic Sargent worker. This is a childhood cancer specialising social worker who operates in all childhood cancer centres throughout the UK. This will be the person who can assist you with finding the right support, whether that's practical, financial or emotional, and may have even handed you our leaflet. Your Clic Sargent worker will stay with you throughout your journey, and you can refer back to him or her whenever you need to.

Home from home. If you live very far away from your cancer centre, you might have already been offered a room in a home from home. This is accommodation close to the hospital, usually run by a charity such as The Sick Children's Trust, or Ronald McDonald trust. If you have not and you think you might qualify for a place, speak to your Clic Sargent worker. These places can be a lifeline at a time when being together has never been so important.

Telling people who need to know. This can be difficult. It is a good idea to think about the people who need to hear it first, such as an absent parent or a grandparent, and then ask that they contact everyone else. It can be very distressing to be contacted by people right now and to have to go over and over things with them when you are not quite sure of anything yourself. Lots of families feel that a Blog, Facebook group or Caringbridge site, helps to keep everyone informed without everyone needing to talk to you directly. This can also be an invaluable tool if you want to launch an appeal. (more about that later, not now).

Practical things to have. A pen and paper, a folder to keep notes and leaflets in, a Dictaphone, a camera and video camera, a mobile phone, access to the internet by way of a phone or a laptop. Pretty much everything else will feel irrelevant, because it mostly will be. It is perfectly acceptable to bring your child's favourite belongings into hospital, but if the child is very sick (quite normal in the early days) then it might be a good idea to keep this to a minimum for now. A wash bag, change of clothes and a pair of pyjamas will be ample. The hospital or the home from home will have a washing machine, some are free, others may charge.

Practical things to do. There are plenty of things you can do, however there is no rush right now to do everything. Make a list of priorities for your own family and don't be afraid to delegate. Perhaps a good place to start is to apply to the hospital for free parking, reimbursement of travel costs or congestion charges. Your hospital's PALS team will help you. You may also be entitled to claim Disability Living Allowance (DLA) and a Blue Badge. Your Clic Sargent worker can help you by getting and filling in the forms for you. It might also be helpful to look up your cancer centre (CC) online and on here and find out insider information and first hand tips that might help you.

The most important thing you can do is reassure your child that everything is OK, they will be OK, you are there with them and they will get better. Positivity is a powerful thing. For now, this is plenty to digest. You will find more detailed information, advice and tips on all this and more in this website which has been put together by many families who have been exactly where you are now.

You are not alone.

Linza Corp


Families Against Neuroblastoma Facebook

We are a childrens cancer charity made up of ordinary families facing extraordinary circumstances. thankyou for being part of our Facebook community.

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