Talking to children about leukaemia

This week my daughter's primary school is having a 'Giving Back to the Community Week'. As part of that they're having a Crazy Hair Day to raise money for the Leukaemia Foundation. I offered to give a little talk at the school assembly to explain leukaemia and what the Foundation does. This is the speech I gave (with a few asides).

Hello. I’m Catherine Walsh, [name]’s mum, and I’m going to talk a little bit about leukaemia, my experience with leukaemia and what the Leukaemia Foundation does.

What is leukaemia?

We think of blood as red. It looks red. But actually there are different parts of the blood. Each part has a different job to do. The white cells fight infection. Haemoglobin carries oxygen around the blood to give us energy and platelets make the blood clot so, when you get cut you stop bleeding. Leukaemia is cancer of the white blood cells. Cancer is when bad cells grow in the body. They tend to keep growing until you stop then. The word ‘leukaemia' means ‘white blood’ - that’s how it looked under a microscope when it was discovered. There are other types of blood cancers that are about other parts of the blood. Those cancers are mainly myelomas and lymphomas. All blood cancers are deadly diseases if left untreated. We don’t know why some people get it.

About a year and half ago I found out I had leukaemia. It is a sneaky disease, and you don’t know that you have it until you have a blood test. The main symptom is tiredness, but you can be tired for lots of reasons, and that’s normal. When you have a cold, you can feel that you have a cold, but you can’t feel you have leukaemia. That’s how I found out - I had a blood test. There are different types of leukaemia. For my type of leukaemia most people are treated with medication - they take a pill everyday and that keeps it under control. But my leukaemia looked like it was about to get much worse, so my doctors decided I needed another treatment, and that I should have a stem cell transplant. (It used to be called a bone marrow transplant - your blood gets made inside your bones in your bone marrow). That meant I needed chemotherapy. Chemotherapy is a strong drug that kills cancer cells. Usually it is in liquid form that goes straight into your veins. It doesn’t hurt but it can make you feel sick. And it makes your hair fall out. That’s why you often see that cancer patients are bald. That’s what happened to me - my hair started falling out so I shaved it off. For the stem cell transplant the doctors killed my bone marrow, so I couldn’t make my own blood. They took some of my sister’s blood and put it in me, so my body grew new bone marrow and started a new blood supply system. It’s a dangerous thing to do, and can get pretty tricky, but I was lucky and everything went smoothly. I’m going to be OK.

 I spent ten weeks in hospital last year, and I met lots of patients with blood cancers. Some of them will get better and some of them won’t. People talk about the battle to fight cancer. Scientists and doctors might think of it that way, but as a patient, I don’t - I’ve spent too much time sleeping to think of myself as fighting. I’ve just been obeying my doctors. We’ve made a lot of progress in treating blood cancers, and I’ve been lucky that we have such good medical treatment in Australia, but there is still a lot of work to do, especially for people with other blood cancers, particularly multiple myeloma.

So, what does the Leukaemia Foundation do?

The Leukaemia Foundation helps people in a number of ways. They provide information to patients - they make booklets about the diseases and their treatments. They provide counselling. They provide somewhere for people to stay if they need to travel from the country to the city for their treatment. They can provide a driver and transport to and from medical appointments. And they organise research to be able to better treat people with blood cancer. Their main fundraiser is the ‘Be Brave and Shave’ campaign. They ask people to raise money by shaving their heads, because if you go bald you might make cancer patients feel they are not alone, and they’ll feel supported. We don’t expect children to shave their heads, so [school] is having a Crazy Hair Day on Friday.

So, thankyou for doing the Crazy Hair Day and raising money for the Leukaemia Foundation. I know we’re not the only family at [school] who has been affected by blood cancer. It really is a worthwhile cause.