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Treatment

This section will offer a brief run down of the treatments, tests, drugs and supliments available, based on the experiences of our families. It will include treatments not available on the NHS, and also treatments only available abroad. Where possible we will include an approximate price. We have tried to list things in the order they are most likely to happen, however the off NHS treatments are listed last as there are many to choose from.

If you would like to submit an entry, please do so at [email protected]

Diagnostic testing

Urine test

(If the child is very small, a bag can be attached by sticking to the skin or cotton wool used in a nappy). This detects catecholamines, markers that can indicate if Neuroblastoma is present. The two main things looked at are VMA and HVA. You will become farmilliar with these levels.

Blood test

Blood is taken by inserting a canula, usually into the back of the hand. This is often very distressing for the child and the parent too. Only a small amount is required for a Full Blood Count (FBC). [*write up on FBC pending]

Ultrasound

CT scan

MRI scan

Biopsy

Insertion of Hickman line (also known as a Central line). commonly known as Wigglies.

RAPID COJEC

Drugs

[*painkillers]

[*fluid balancing]

[*antibiotics]

[*anti-sickness]

Blood and Platelet Transfusion

Chemotherapy

[*list of chemos, side effects, suppliments etc]

Mibg (test)

TVD

Surgery to remove the primary tumour

[*intensive care]

[*drains]

Stem cell harvest

High Dose Chemotherapy

VOD

Radiotherapy

Antibody Therapy

Further possible treatments

MIBG Therapy

MIBG therapy is a relatively easy treatment for a child to tolerate but the main downside is Isolation. As a mum who has had a child receive this treatment I have put together a few tips to help you get along.... If your child is going for MIBG Therapy (chemical name Meta-Iodo-Benzyl-Guanidine) you will already be used to having MIBG scans. This time they will infuse a larger amount of MIBG into your child's Hickman Line. Before this the MIBG dye will be attached to a Radioiodine (this is a form of Iodine which is very radioactive) . The MIBG is taken up by the NB cells and the radioactivity kills them.

When you arrive at hospital everyone will be ready for your child and there will be play specialists, teachers a named nurse etc. Depending on the age of your child their will be planned activities throughout your stay and if your child is of school age work can be set and you can request a laptop for your child which is connected to the hospital school.

The Play therapists will have already spoken with you on your child's likes and dislikes and she will have filled the room with things your child enjoys. There is also a small fridge where snacks and drinks can be kept and also a pull down TV. There is a private bathroom which is ONLY to be used by your child and everything that is in the room at the start of treatment will have to remain in there for the duration or until it has passed a radioactivity test.

Food

The hospital will provide a menu for your child and all meals will be on disposable trays and plates etc which can be discarded in the bin provided afterwards. Your child will also be able to request anything else they want drinks, snacks etc and they will be provided. For parents at UCHL there was a token system where you got two tokens a day to be used in the Tesco Express meal vending machine which was situated on the Teenage Cancer Ward a floor above. These where ok but i would suggest you take plenty of Cup a soups, tinned food, or any other non perishables as fridge space on the main ward is limited. Also at UCHL the oncology centre is on the 22nd floor so popping to the shop with a young child to leave is often a nightmare.

Clothing

Only take your child's oldest clothes or very cheap specific bought clothes as they more often than not wont be allowed back home with you. Do not take any special expensive clothes and if a child has a favourite item its best to probably try and buy a copy! Clic Sargent will help with clothing bills for your child too. If your child has a comfort blanket like mine did it is essential it is taken the staff in the hospital are good and have a huge washing machine which washes at 95 degrees. Our blanket went through three times and was finally declared fit to leave!

Medicines

Remember also that The thyroid protection drug Iodine is a foul nasty smelling liquid this will have to be taken throughout the treatment on a daily basis. There is an alternative called Potassium Iodine which comes in a capsule this can be opened and sprinkled on a spoon of yoghurt or ice cream. Your child will also have there bloods checked on arrival as the HB is needed to be 12 or above to start treatment. Your child will also spend a short time on IV fluids in preparation for treatment.

Yourself

I often feel it is as hard on the parents as the children during this treatment as you will be confined also to your sleeping area which is just big enough for a single bed. Take lots of books, crosswords and anything else to keep your mind busy!! You are separated from your child with a heavy lead sliding door which works on a button system there is also Lead portable barriers in the room so you could sit inside and watch TV with your child for a bit providing the barrier is between you. There is also a TV at the end of your bed which is focused on your child in the room and vice versa so they can be comforted by being able to see you.

If you are at UCHL there is plenty to do outside the hospital too you are slap bang in the heart of the west end on Euston Road. The zoo is within walking distance and Madame Tussauds is close by too, there are some lovely shops and a Sainsbury's and Tesco's 2 minutes from the hospital. But do remember there is NO parking at the hospital or surrounding areas Also more importantly the blue badge is not recognised in parts of London and a pass has to be issued by the hospital on showing your blue badge.

Jai

Lutitium

I.T

An Organic Diet

As Zac's mother I was determined that I would do everything in my power to help him. My mum (Zac's nanny) had already spent the previous 14 months researching the disease for Zac's cousin Chelsea, who also had Neuroblastoma, and one of the things that she had found was that cancer cells love fat and sugar. I had a good idea of what I had to do. Pretty much straight away I went home and went through the contents of my cupboards, fridge and freezer. Out came the ice cream, lollies, any sweets, crisps and any other high fat or processed foods I found lurking there. I can honestly say that Zac would not know a fizzy drink if it was given to him but I was, at the time a full time working mum and I would sometimes cut corners with cooking using sauces from jars etc etc and during my fridge raid I came across a pack of fudge bars, two tubes of smarties, a jar of spaghetti sauce, Dairylea cheese etc etc.

This all changed virtually overnight. The first time I went shopping, it took me 2 and a half hours and I spent £150 (my weekly shop before was in the area of £70). It took me a few weeks to get the hang of what to look for but I have learned that if you start from scratch on all your meals you stand a better chance of keeping it completely organic and preservative / additive free. The first time I served Zac spaghetti bolognaise I knew I was onto a winner because he ate it all and asked for more. He has always been particular with his food, liked it served a certain way etc and if it was not right he would not eat it. Getting green vegetable into him took longer. I now have to hand blend them and mix them into his gravy. It was not all plain sailing though. Try telling a five year old boy that he can no longer eat chocolate buttons, ice cream or his favourite crisps. Be prepared for "why are you doing this to me mummy?" or "Have I done something bad?" or worse still "I hate you mummy".

I consider myself a tough cookie but the times I wanted to give it all up and go back to 'normality' but I knew that if I did I would be significantly reducing his chances. You have to be tough, you have to say to yourself that this is what you have to do to make your child live. It is not easy by any stretch of the imagination and even now - 14 months later I still get the tantrums if his friends are outside eating an ice cream from the van that comes round and he cannot have one. I have managed to find alternatives for pretty much everything now and I think Zac is beginning to understand that I am not being mean to him but things simply had to change for his own good.

I have listed below some tips that you may find useful:-

  • Cut down on your shopping bill by finding someone with an allotment and who DOESN'T use any form of pesticide. I have a lady in Rushden who provides me with organic grown cabbage, carrots, swede, potatoes and apples whenever I need them.
  • I do a 'large cook up' around once every 4 - 6 weeks. I will for example cook a shepherds pie, portion it up and freeze it in dated containers. I do the same for apple crumbles, pies etc.
  • Buy cheaper cuts of meat for those who do not need to eat organic.
  • Buy in bulk whenever you can, larger cuts or packs go further and work out cheaper for you in the long run, especially if you are doing a large cook to freeze.
  • Not always easy but try and shop in just the one place. I tend to shop at Waitrose because they do a good selection of organic foods together with a good 'basics' range.
  • Don't be tempted to cut corners. If you are going to do it and if you want it to make a difference, do it properly.
Sam Kingston

Hypobaric Oxygen Therapy (HBOT)

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