Kevin Hill
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Your Child has Leukaemia

Kevin Hill
Posted by
09 May 2015

I originally wrote the following piece 18 years ago when we were some 6 months post diagnosis with our daughters leukaemia and, as others had done for us, trying to ease newly diagnosed parents into coping. The start is always difficult and sometimes it was easier to have something to read and share than talking. I recently shared this with Bekah at LLR and she suggested that it would make a good blog so here goes.

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You've just received probably the most devastating news you can possibly imagine,

YOUR CHILD HAS LEUKAEMIA

A roller coaster has just tipped you over the most terrifying drop imagineable and you didn't know you were on the ride, you sure as hell wouldn't have bought a ticket. I know we didn't but as they say - "Been there done that, got the t-shirt".

You have no doubt conjured up every nightmare, and then some.

You heard the word leukaemia and a scream started way down and is rising, it's probably so loud within you you heard little, if any, of what came after those words and now you're scared, scared like you've never been before and asking WHY?????

You are probably trying to be brave in front of your child so they can't see just how frightened you are. Don't worry [that's easy for you to say I hear] we went through all of this and unfortunately we came to know dozens of other who faced this situation. You will soon meet more.

YOU ARE NOT ALONE

First the good news, and yes there is some good news. You are in the hands of some of the most caring, loving people you could wish for. The Haematology / Oncology / Specialist Nurses / Doctors / Consultants are the best there are. Shortly they will be like family and friends, and like family and friends you will share laughter, tears, quarrels, happiness and sadness, and like family they will always be there for you in a way you cannot envisage at this point in time.

You probably received your diagnoss completely out of the blue, this was the last thing on your mind when your child was ill. It was for us. That morning is etched in my memory as vividly today as it was then. Believe me though things calm down [of course calm is a matter of degree] and unbelievably quickly, quicker than you think. They have to, as you have so much to learn. In a matter of weeks you will be speaking "Haematology" like a native and without the expense of linguaphone.

Your consultant and one of the nursing staff have probably told you about leukaemia, but like me you were probably in no fit sate to comprehend anything other than leukaemia = Cancer.

I can no longer express it in true laymans terms [and shortly neither will you, as you will probably be better informed than your GP on the subject] but basically one white cell in the bone marrow [blood factory] has mutated [turned malignant]  and has begun cloning [reproducing] at a massive rate. These have then spilt into the blood stream, outnumbering and overcoming the healthy red and white cells and platelets, attacking the liver and spleen. The immature cells [blasts], replace healthy white cells which are required to fight infection, and as the immature cells dominate, the bodies immune system starts to fail. Common signs of leukaemia would include recurrent infections that don't respond to antibiotics, and or, your child being pale, tired, listless, prone to bruising easily; am I ringing any bells?

This is just a basic summary; far a more detailed explanations have been / will be given to you. Listen. Ask. The nurses are  the best there are but if they don't know they will find out for you. They were there for us when we needed them, they will be there for you, just ask.

How am I going to cope I hear you ask [scream] I know I did, after all it's one thing to see it acted out on TV, watching someone else cope and ponder what would I do? Now it is you.

My advice, for what it's worth, is to share the situation. Don't feel you have to keep it secret, it's nothing to be ashamed of. If your child is of an age to understand some or all, tell them what they can cope with. If like our daughter, at 27 months, it is really beyond them then just continue to show love and calm and strength. If you're ok they are ok, if you're distraught they will be. If like us you have other children explain to them to their level of understanding and keep them informed of progress.

Involve your family and friends, you are going to need a big support system over then next five years and more [this is no quick fix] the first six monts are the worst - they say.

SUPPORT YOUR CHILD

SUPPORT YOUR PARTNER

BE OPTIMISTIC

BE REALISTIC

You are shortly going to find strength you didn't know you had. You are unfortunately going to lose some you thought were friends, but you will find support from the unlikeliest scources and people, it's a fact of Leukaemia.

  • Listen to the Doctors
  • Listen to the Nurses
  • Get a notebook to write down those questions - believe me you'll forget
  • Read as much, or as little, as you are able to take in
  • Ask questions
  • Ask questions
  • Ask questions

Strap yourself in it's one hell of a ride, there's no stopping and no getting off.

As for why, well as Camelot say "It could be you". That is not meant to sound patronising. As it was put to us, random choice is the only answer.

One thing is for certain nothing you did and nothing you could have done would have changed the outcome. So put that question at least to the back of your mind

LEAUKAEMIA IS A WORD - NOT A SENTENCE

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I hope this helps, it helped us

 

Comments

12.05.2015

Kevin, thank you so, so much for sharing this!

Some absolutely wonderful advice in here for parents who have a child who has recently been diagnosed or is currently undergoing treatment. You also express very clearly a lot of the conflicting thoughts and feelings that a number of parents will be experiencing and will not be quite sure how to process especially the trying to put on a brave face for your child when inside you are very, very frightened.

I hope that you are well and that you're training is going well. Keep up the good work and thank you for everything that you're doing to help us beat blood cancer. Would you be happy for us to share this blog on Facebook to help others who are in a similar position to where you were when Naomi was diagnosed?

You're doing her proud by the way and I think it's fantastic that you're looking to turn such a negative in to a positive by raising money and helping others. We're doing everything we can to beat blood cancer adn will not stop until that's the case!

12.05.2015

Andy

Absolutely happy to share as you think fit.

Aas I said wrote this to share with parents when we were going through this and if it's still relevant then by all means go ahead.

Training continues going well but then when I stand back and look at the challenge I do wonder why, but then look at Num's picture and know exactly why.

Kevin