The treatment of all childhood cancers is largely prescribed by a number of "protocols" or treatment patterns.  In effect every child is part of a national research project.  Get as much information from your consultant as possible.

The news that your child has leukaemia will be a huge shock.  Setting the relationship you want to have with your consultant from the outset will help greatly in the future.

This of course will be different for every parent, just try and decide from an early stage how you want to be treated as a family rather than accept how the consultant wants to treat you.

Unless you make it clear that at all stages of your child's treatment you want and expect to be involved in any decisions that must be made you may find that it happens without you.  Some consultants are just not used to not  making those decisions for you and then telling you what is happening as if it is a given.  Ask to be told exactly what all the options are, together with an objective view of the pros and cons of each. 

Put it to them that you will work better as a team - they are the acknowledged medical/clinical experts - you are the experts on your child.
 

We found "Why" and "What" to be main questions.

Why is this the best treatment, What are the side effects, What are the alternatives and Why don't you think these appropriate were the main questions we asked.

Hopefully your child will be in the majority group that respond well to the standard protocols and this lesson will be of less relevance.

But if you are one of the few unlucky ones as we were, it is worth remembering that if your child fails to respond to standard protocol treatment or relapses at any stage then at the time of writing the medical profession is in uncharted or at best sketchy territory.

We found that consultants tend to have very personal views about what treatments are worth trying and which will be too unpleasant and perhaps most importantly when to stop curative treatment, and then what palliative treatments should be offered.  These opinions ranged from one end of the spectrum to the other.  Your challenge will be to get your consultant thinking "outside the box" and considering with you what is best for your child, prepared to discuss with you all the possibilities, regardless of their own beliefs. 

Taking on greater responsibility in this way can lead to great confusion at times but we never regretted it and found that the "answers" tended to present themselves once we were in possession of the full information.  Importantly, we can now feel that we did all we could and should have done to help our son in the best ways for him.
     

It was said to us by one of Jamie's consultants that "Oncologists tend to be control freaks".  Perhaps this is too much of an generalisation but we certainly found that we we were not encouraged to look outside.

However, through perseverance we did and found that ALL the consultants we asked to talk to were extremely happy to take the time to either speak on the phone and/or meet with us.  We found that preparing a summary of Jamie's treatment(s), blood counts and results was very useful to them.  We would normally fax this to the consultant in advance of the call.

The main centres we spoke to in the UK were Bristol Childrens Hospital, Great Ormond Street in London and Birmingham Childrens Hospital.  Your consultant should be able to put you in contact with the appropriate consultant.  If you are having problems then send us a mail brian.gregory@leukaemia.freeserve.co.uk.

We  also communicated with several centres in the US and Europe, who were again very helpful and responsive.  It is useful to know that the UK protocols are somewhat different to those in other countries and that information is not necessarily shared as freely and widely as you might expect.  This is not to say that they are any better or worse in terms of success or severity of treatment but different treatments are tried in different orders.  Also note that identical drugs often have different names in different countries.
 

This is a very difficult and personal decision.  Jamie was 1 month away from his 9th birthday we he was diagnosed.  He was a bright, intelligent boy who we had always talked to about everything.  Knowing what to tell him was very difficult.  In the end we decided to tell him everything except how serious his version of ALL was.

The medical world also find it difficult to know how to deal with children of Jamie's age.  They are too old to be ignored and too young to be fully involved.

Make a decision that is right for you, your child and family and make sure the medical team are aware of how and what you want your child to be told.

Although the chemotherapy normally requires relatively short periods of time in hospital, 3~5 days, one of the major side effects is that the child's immune system is severely depleted.  The result of this is that they are almost certain to pick up some form of infection.  The main indication is a rise in temperature and taking their temperature regularly becomes part of the daily routine.

The normal way to treat the infection is to admit the child and use intravenous antibiotics.  Although blood cultures and swaps are normally taken in our experience these rarely showed any specific results.  In practice they would work through standard combinations, known as "lines", giving 4~5 days to assess each one.  Only when the temperature has been stable for 48 hours will the child be released.

Jamie was relatively lucky but he still has 4 blocks of 9~14 days in hospital.  These can be tough times for the child, parents and brothers/sisters.  Like most children Jamie wanted his mother staying overnight but which ever your child wants it is often difficult for both parents to stay especially, as with us, there are other children.

You need to ensure that whoever is staying gets a chance to "escape" for sometime each day.  "Ward Fever" sets in very quickly.  The ward can be a highly stressed environment.  Most of Jamie's treatment was at the Royal Marsden and all the children had seriously cancers.  You and all the other parents are worried.  Unless you get some time out it can very difficult to be in the right state of mind to support your child.

So try and work out a rotor that gives time out.  Use relatives and friends to provide the opportunity for you to get out at times that help you the most.  Just getting out for a meal with your partner can be a major boost.

If you have other children see Lesson 6

A few things we found useful to have around:

*    A good thermometer.  Some parents bought "ear" types (around £40) but we      found an oral digital one from Boots was fine (around £12)
*    Water free hand wash, trying to minimise the chance of infection was always a priority and having a small bottle of this (generally available in supermarkets) was always useful
*    Book/story audio tapes, portable radio and a books for hospital
*    Jamie became very interested in computers and we were lucky to be able to let him use a spare laptop from my office.  As well as the normal games Jamie found email a good way of keeping in touch with friends.  He also designed and built his own web site.http://www.startrekv.freeserve.co.uk/