So, what is 'leukaemia'?

Many people have been keen to know what exactly Ned has and what the road ahead looks like, so let me explain the basics.

Leukaemias are cancers of the bone marrow, where high numbers of immature cells, which would normally develop into infection-fighting white blood cells, undergo malignant (cancerous) change and become abnormal 'blast' cells. These multiply and proliferate rapidly, soon crowding the bone marrow, and interfering with normal, healthy blood cell production. The increasing numbers of blasts (leukaemia cells) eventually spill out of the bone marrow, into the bloodstream, and travel around the body to other organs. As with all of medicine, there are of course different types and subtypes of leukaemia.

Our Ned has had blood tests, a lumbar puncture and a bone marrow biopsy, which have confirmed that he has pre-B cell Acute Lymphoblastic Leukaemia - ALL being the commonest leukaemia in children. Without urgent chemotherapy treatment for ALL, it would be fatal within a few months.

Symptoms of this leukaemia can include bruising, bleeding, bone pain, unabating fevers, irritability, lethargy, weight loss, nausea and vomiting, and extreme immunosuppression, amongst others.

The main treatment is chemotherapy (therapy with meds, as opposed to radiotherapy being treatment with radiation); different combinations of which are designed to kill reproducing cells, including cancer cells, but also affecting normal hair-follicle cells, etc.  Ned's on a total of 5 chemo agents, and the protocol will vary weekly, depending on his response (bloods will be regularly checked).

Our weekly routines will involve hospital appointments, blood tests, occasional hospital admissions and GAs (general anaesthetics) to do procedures that check his treatment response, lots of medications, and no hard-and-fast plans, because if ever he becomes unwell, has a fever, or bleeds a lot, we have to rush straight into hospital... However, even though this is what we've been told, we're still very unsure exactly what our 'routine' will look like and how our weeks will play out, seeing we've been in hospital since the diagnosis.

Being a boy, Ned will need approximately 3.5 years of treatment (whereas girls need 2.5). The 5-year survival rate with his type of leukaemia, with treatment, is now over 80% (when no relapses occur), and the prognosis is better the younger the child is... which means Ned's long-term prognosis, as a just-2yo, is pretty good.

Fortunately, we caught Ned pretty early - he wasn't in too bad shape, and wasn't displaying many side effects. Having said that, on bone marrow biopsy, we discovered 94% of the bone marrow was blasts (leukaemic cells), and his neutrophils (infection-fighting cells) were 0.0 - where most of us are normally over 2.

This means that dear Ned is very immunosuppressed - so despite being fully up-to-date with his vaccinations, he's susceptible to everything and anything, and will get very sick if he does contract something (even just a cough or cold).

Consequently, our family now have to ramp up precautions for visitors and outings - when his neutrophils are below a certain level, we can't take him out or accept visitors. Seth, Lucy and I have to be super-careful who we're around because we can carry things, and we live with him.  

I hope that explains it a bit for those who are interested. (And by the way, the Leukaemia Foundation website is great too.)