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.)

Emily

The New Normal

My first thought was, 'no, this can't be, this is what happens to other people'. Then I learned to spell Leukaemia and discovered there are never enough tissues for times like this. Then I discovered a new calm, a new strength, fought back sorrow and tried to work out the 'new normal' for our lives.

The new normal means 'sleeping' in skinny fold out bed next to my son, with regular interruptions of obs, medicines, blood tests, beeping machines, and the cries of the baby next door. The new normal means trying to have dinner as a family with no table, a chatty needy five year old and a grizzly Ned who won't eat, while trying to catch up on the day with Emily. The new normal means trying to continue the rest of life while spending most of it in hospital. 

But this new normal, this new chapter in our lives has made me realise a few things. We really are incredibly blessed. The willingness of so many to help in so many ways is incredible. The hundreds of messages, calls and emails of support have been encouraging and comforting. And we live in a country that provides excellent health care and provision for situations like this. 

So while this 'new normal' will be hard, especially as Ned's little body adjusts to the drugs in the days, weeks and months ahead, I know that we are loved, we are cared for and we are prayed for. 

Seth 

The start of our journey...

This stressful, emotional, rocky journey all started about 6 weeks ago, when our beautiful, cheeky, kind-hearted Edward (or Ned) landed a bit hard off the end of a slide - which I didn't actually witness. He cried a bit, and then walked off and kept playing. Later on that day, he started whingeing, limping, and then resorted to crawling. I thought it a soft tissue injury, which would heal with rest and Nurofen, etc. 4 days later, he was still complaining and refusing to walk, so I took him to his GP. X-rays and exam revealed nothing, but we put a cast on anyway - just in case. 

The X-ray a week later revealed nothing again, so the cast came off, but after a few days, still wasn't improving. I brought him back 4 days later (feeling a bit over-the-top!) and we were referred to the orthopedic service in town. They assessed him a few days after, and deemed it a healing ankle fracture, which wasn't visible on films. 

He then got quite sick - with just a viral croup+cold-type thing - but he was worse than I'd ever seen him. And since I happened to be studying for my upcoming medical exams at the time, I had just done childhood leukaemias, and the thought crossed my mind, but I thought I was just being a "melodramatic, over-worrying, pessimistic doctor". 

All this time, though, my worry and concern was rising and causing great emotion and sleep deprivation.

He recovered eventually from his cough and cold, but still wasn't walking, and in fact, was regressing - refusing to weightbear. By this time, having seen specialists, had normal scans, and thinking the actual incident was minor, I started thinking it was a behavioural refusal to walk, so I coaxed and assisted him, against his will, on several occasions - something I deeply regret.

Getting to the 5-week mark, with no improvement (and, in fact, regression) made me stress enough to refer him to our paediatrician - who very kindly read my concerned letter and fitted us in 2 days later, despite being booked out for weeks. She was similarly concerned, and so ordered a bone scan and blood tests for the next day - Friday, the 25th July. 

Needless to say, after a long day in the hospital doing these tests, these results were the ones that revealed Ned's diagnosis of leukaemia. 

It was awful - Ned having had a bone scan (and so emitting radiation) meant that pregnant me couldn't be near him for 6-8 hours afterwards... So Seth was on one side of the room with Ned, and I was on the other when the paediatrician showed me the bloods and told us the diagnosis. There's that saying "walls come crashing down", and they really do... That little, giggling, rosy-cheeked munchkin in the corner was so very sick - in contrast to what his appearance suggested... And he was so very unconcerned about our tears and grief. 

The following 45 minutes was filled with information, meeting oncology staff, and learning routines and plans - which are to become our lives for the next (at least) 3.5 years.

The grief came in different emotions - in bursts... The trauma and challenges ahead that Ned was facing, the fact that he was so sick, the sadness for Lucy when she couldn't have her beloved little brother at home, the impact on our lives physically, the ceasing of my work (for the time being), the psychological impact on all (3!) kids, my parents being so far away (in Congo) and unable to cuddle their dear grandson, the potential negative effects on my study for my upcoming major fellowship medical exams (2 weeks after diagnosis), our plans to travel and work overseas... 

I had been used to being the doctor - on the other side...