CHOC Childhood Cancer Foundation (Pietermaritzburg Office)

An Open Letter to a Parent with a Child Newly Diagnosed with a Life Threatening Disease

You have just started one of the periods in your life that you will always remember.
You never thought that something like this could ever happen to your child. You thought that it was your right that your child would grow up to be just like you, with the occasional illness or broken limb, but you never anticipated an illness that could take their life.
Now you know differently, and if you are like most of us who have been down this path ahead of you, then your outlook on life will probably be changed forever from this week onwards.

During the next few weeks you will go through many emotions.
· You will feel anger at the unfairness of it;
· You will grieve that all the dreams you had for your child could come to nothing;
· You will try to bargain with God to cure your child;
· You will blame yourself for causing the illness;
· You will regret not doing things with your child that you intended to do;
· You will feel lost and confused by lots of medical jargon and new words;
· You will agonise over what you should tell your children, your parents, your friends; and you will wonder how you will cope with it all.

In other words you will behave just like the rest of us parents who have been in your situation. You will have to develop your own methods for coping with things, depending on your own personal situation.

However, you may find a few guidelines useful as a starting point.
· Be honest and open about the illness, to your relations and friends, to the school, your employers, but, most of all to yourselves and your children. Your child knows that he or she is ill; don't make him or her hide his or her feelings to try and protect you.
· Your family and friends will not at first know what to say to you, and they will be very uncomfortable with you. The more openly you talk about things, the easier it will be for them to respond to you and give you the help that you will need so much in the coming months.
· Get used to saying the name of the illness out loud. Words like cancer, leukemia, aplastic anaemia, Fanconi anaemia are normally spoken in hushed voices, and never in the presence of someone who has them. It will be with you for a long time, so get used to saying it, and even talk about death. It makes it so much easier for your family and friends to talk openly if you do so.
· Don't be afraid to feel or show emotion; it just shows that you are human. If you didn't feel angry, sad, confused and many other emotions when you learned about the diagnosis, then you are very unusual. Don't forget your sick child, and your other children, will have to cope with many new experiences and emotions. Let them see it is alright to feel afraid, to be unsure and to cry at times.
· Remember that you are in this as a family. Many families who have a good marriage to start with, find that they are all strengthened by the experience; but it is not unusual for a marriage to be very stressed by all the extra demands that an illness like this will put upon it.
· Call you the resources that you have. Use your family and f riends; if they are true friends they will only be too glad to help you now that you really need them. Use your church; get people to pray for you and your child. You will be surprised how much and how readily people will open up and help you, if only they knew how; and that is why you need to make your needs known.
· Don't be afraid to ask the medical staff. You will probably not take in half of what is said to you in the early discussions, and there will be a whole new vocabulary in your life. Keep notes of the questions you want to ask. There is a lot of literature available, and you will want to get as much knowledge as possible, so ask the staff what they recommend.
· There are no guarantees. The medical staff will do their best; there may be a very good prognosis for your child; but it is still a life threatening illness, and you will live with this for a very long time.

There will be times when all seems dark, and some very happy times. The best way to get through the coming weeks and months is to take it one day at a time.

May you find the strength in yourself, your family and your friends to grow through this trying time in your lives.

From: Other parents who have been there before you.

"Keeping more than hope alive"