I (Emily) thought I'd have a study break and answer a few commonly-asked questions :)
# Who is Edward (Ned)?
Our Ned, now just 2, was born in the afternoon of the 19th May, 2012, to besotted parents and a doting older sister, Lucy. He came into the world screaming, and didn't really stop, or sleep, for the first year of his life! But he was such a beautiful blessing in every other way - his energy (initially manifesting as screaming and insomnia) and zeal for life meant that he had a beautiful belly laugh and engaged with everyone around him from early on.
Typically, despite our gender-neutral play and toys, it became obvious that Ned adores anything associated with construction, trains, trucks, mud, animals... He also loves nurturing baby dolls, fairy dress-ups, and has a book obsession (thanks to his bookworm sister). His favourite and frequently-requested outing is to the tip shop with Daddy.
Nearly 2 weeks ago, our gorgeous, cheeky munchkin was diagnosed with Acute Lymphoblastic Leukaemia (please see first blog post), and that's the journey this blog is documenting.
Unfortunately, the day after his diagnosis, Ned became febrile and got very sick, so he's spent most of the last 12 days in hospital - which is what will happen if he ever does get a fever or become unwell.
# What's the treatment like?
I've written about the chemotherapy treatment in an earlier post, however I just wanted to clarify the long-term plan. Essentially there are different phases of chemo (depending on the type of leukaemia and the protocol), and they each last for different periods of time:
- Stage 1: Induction (what we're currently in) - 5 weeks of aggressive treatment to try to induce remission.
- Stage 2: Consolidation - 8 weeks, with different meds, depending on how he's responding.
- Stage 3: Interim maintenance - 8 weeks.
- Stage 4: Delayed intensification - 9 weeks.
- Stage 5: Maintenance - approximately 3 years, still involving regular chemo and close monitoring, but less frequent.
We have to go to hospital approximately 3 times a week - for tests, chemo, doctors' reviews, etc. The idea is that we cocoon him at home to keep him healthy enough so he avoids long hospital admissions as well!
# Will his hair fall out?
Yes it will, but probably around the 3rd month of chemo.
# What 'causes' leukaemia'? Was it triggered by something he was exposed to early on?
Definite risk factors that have been identified are a very strong family history (which we don't have), and early exposure to whopping doses of radiation (like after the nuclear accident in Japan). Otherwise, it seems to be random and incidental.
And in answer to some people's (AND my) questions and concerns, the minimal phone usage and few plane flights I had when pregnant (after 1st trimester) are not at all to blame, according to evidence and our doctors. I've always been very careful of what I expose myself to, particularly in the first trimester - not carrying my phone on my body, not flying, etc... which I suppose, does give me some peace of mind.
# Can we accept visitors?
Unless you're a very well and healthy adult or couple of adults visiting occasionally, we can't have visitors, for the same reason that we can't take Ned out anywhere. Ned is completely neutropaenic (ie. his infection-fighting cells are non-existent), so it's dangerous for him to be exposed to normal bugs that healthy people would shrug off. Unfortunately this means that our social life has to take a backseat for the next couple of months while we keep visitors to a minimum (this doesn't mean that Seth, Lucy and I can't go out ourselves!).
# Are Seth and I taking time off work?
Seth's decided to continue working because he only works 2 days a week (as a high school art teacher) at a very understanding school nearby. Everyone there knows about the situation and is showing him a great deal of support. He also finds it therapeutic to escape the "cancer-focus", the hospital life, and the chaos at home.
I am, however, taking a few weeks off (my work as a GP) - partly because I had a week off as planned study leave this week anyway (in the lead-up to my fellowship medical exams on this Saturday, the 9th), and partly because I was in-between jobs - about to start full-time rurally (in Huonville) next Monday. Seth had dropped his work days to be the primary at-home parent so I could go full-time to finish off my training before bub #3 arrives in February next year. I have also worked on the hospital's paediatrics ward previously, am a bit more familiar with the treatment, and just really want to be around to comfort Ned (he just wants Mummy at the moment).
The other reason is that my work is medical, and truthfully, I don't have it in me to be dealing with and managing other people's illnesses just at the moment. I think I'd struggle to think straight if I had to treat any 2-year-olds, and would probably over-order investigations on any child!
# How are we all going?
To be perfectly honest, we're struggling a bit this week. The long-term reality has hit hard, and Seth and I are a bit flat, feeling sorry for our darling boy, who is so sad, uncomfortable and tired. Today was my first day at home with just Ned, with no "hilarious" Daddy, playful Lucy (at school), friendly nurses, entertaining clown doctors... and it was tough! I'm now really noticing how little he can do, how miserable and disinterested he is, and how limited we are with our activities - of all sorts. Ned still can't walk, and he's so anaemic that he barely has energy to even crawl. One of the chemo drugs, dexamethasone, has some known, awful side effects - concentration problems, irritability, emotional lability, hyperactivity AND lethargy, and generally feeling dreadful. So, for one of the first times in my parenting career at home, I used the TV for a bit today (it was also used in hospital)!
When we are not in hospital, we have to stay at home. We can't go to a playground, do a supermarket run, plan play dates or cafe meet-ups, have people around (other than a very few healthy close family members and friends), go to art galleries, attend our local primary school's early education program like we used to, or just play with other kids (even if they seem healthy, kids often harbour some nasty bugs - moreso than adults). Suddenly, our once-busy, adventurous, social life seems quite empty, and with a non-walking, whingey 2yo boy, life has suddenly become a bit more challenging and a bit less vibrant.
And although he still has hair, Ned is starting to look more "unhealthy"... the pale skin, the sunken eyes, the absence of his usual hearty chuckles and cheeky smiles - all a stark reminder of the battle my dear little man's body is fighting, and how little I can do to help him.