Update: The Last Week

So... I guess the 'news' of this week is that my fellowship medical exam is over - for the moment. It was on Saturday (8-5pm) and I found it quite tough. I couldn't really have dreamt up a less ideal or more emotionally challenging lead-up and preparation, so I don't have high hopes of passing, to be honest. But all in all, at this point in time, although I'd love to pass, my care factor is rather low.

We've just come to the end of Week 2 of Ned's leukaemia treatment, and it was fraught with anxiety and weariness.

Monday evening, Ned was admitted to hospital for a GA (general anaesthetic) and other procedures early Tuesday morning, followed by his regular chemo. He didn't bounce back as quickly as he had the preceding week, but he was ok and therefore discharged Tuesday evening.

Wednesday was the day I documented in my last blog entry - Ned was miserable and lethargic... which seemed in keeping with chemo side effects. I had planned my last 2 full days as "cram" days before Saturday's exams. I clearly hadn't remembered the "no plans ever" Golden Rule when living with a neutropaenic leukaemia sufferer!

Over Wednesday night, Lucy started vomiting profusely. We were up most of the night, and the times when it was quiet, all I could think and worry about was how on earth we could prevent Edward so easily contracting it... and how I'd stay well enough to get through Saturday.... So we instituted strict bedroom quarantine on Thursday, and have succeeded - thus far!!

Unfortunately, that Thursday, we all awoke with colds, and Ned's energy levels deteriorated further. We took him into hospital for bloods, which revealed an expected anaemia, although with a haemoglobin count borderline for needing a transfusion (explaining the extreme tiredness!). 

Friday, we needed sunshine and fresh air, so I popped him in the pram, rugged him up, and took him for a run. In his quiet exhaustion, his occasional small smiles seemed to convey enjoyment of finally getting outside, and he remained essentially ok until early afternoon, when he started deteriorating rapidly with a rising fever. He was admitted, started on IV antibiotics, and scheduled for a blood transfusion Saturday morning - when I would be completely uncontactable in the exam! Sleep that night didn't come easily.

Poor Ned's weekend in hospital hasn't been pleasant, but we're hoping his energy levels will improve somewhat now he's replete with haemoglobin, and once he's rid of the infection.

We're commencing Week 3 of Ned's treatment today - which means we're nearly halfway through the 5-week Induction phase. And we've been blessed by so many things we are so grateful for: 

- The constant messages (phone, emails, cards and Facebook) that we both receive. In contrast to what some of you may think, each one is read and treasured (even if we don't get around to replying)! Our newsfeeds are full of happy children who are healthy and walking, and we mourn for our old Ned, but your messages remind us that you are thinking of us or praying for us. It is so reassuring and comforting to know that hundreds of people worldwide are lifting us up in prayer.

- The steady stream of meals that have been arriving on a daily basis. If there's one thing we don't have the energy to think about at the moment, it's cooking nutritious meals for the family. 

- The dear friends who are visiting us in hospital with coffees, bringing sugary sustenance, sending care packages and toys, helping with this blog, doing our laundry, looking after Lucy and looking out for her, taking beautiful photos, providing a listening ear, and just being there. You know who you are :)

- Our beloved families. Seth's wonderful parents have helped, visited, risked contracting gastro, and prayed endlessly. My fabulous aunt and my legendary siblings (Olivia, Simon, and Simon's wife, Emma) have all flown down from Melbourne at different times to live in, cook, clean, tirelessly help out and give us a bit of break. I know my parents would be too if they weren't working in Congo!

For all these various contributions and gestures, we thank you, because they're all making this arduous, undesired journey that much less lonely and depressing.

Emily

FAQs

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.

Ned's Mum, Emily

While many of those following this blog already know who we are, Emily had a great idea (she has lots of those) of using a couple of entries to tell a little about the Isham family. This would help people get a picture of our situation and context and maybe even draw people more into our journey with Ned.

I must take a small tangent at this point, just to say 'Isham' is pronounced 'EYE-sham' for any that thought it was 'ISH-am', worth mentioning because I internally cringe every time a nurse or doctor mispronounces the surname in our stays here at the hospital. Poor Em has suffered being called 'Dr Islam' on occasion too, but that's another story. 

Okay, feel better now that I've got that off my chest. I suggested to Emily, building on her great idea, that we write about each other as an intro to our readership. She has thankfully agreed to this, but I am on strict instructions not to be corny. So while I am immensely in love with my wife I am not allowed to gush about it. :)

Emily grew up in the DRC, the first daughter of CMS missionaries to the then Zaire. Schooled in the Belgium education system, playing with African children, growing up next door to the Rwandan Genocide and for a few years attending a boarding school in a remote part of Congo. Among other things this gave her a unique skill set, fluency in two languages (other then English) and a deeply imbedded passion to serve God overseas. Returning home as a young teenager and having to adjust to life as a 'third culture kid' presented some challenge for her. She struggled with 1st world luxury and opportunity while her 3rd world friends back in DRC had very little. But this struggle became a strong driver that helped motive her through high school, Med school and beyond (and even led to her creating The Mafunzo Project- you can read about it here.

Naturally I don't sit in on Emily's appointments as a GP, and patient/doctor confidence prevents me knowing much about her day to day life at the practice. But I learn from colleagues, friends and others that pass on their experiences, that she is excellent in her work. She is thorough, gentle and works hard to solve each problem that arises with her patients. She is very observant and considers everything very carefully. I think it was her skill as doctor that spotted something amiss with Ned very early on. She's a realist, but her increasing worry for what she suspected might be going on drove us to the point that you can read about it the first entry. Her optimistic, idealist husband (me) kept thinking 'he'll come right', but my deep thinking, observant and skilful doctor wife knew something was amiss and I am so grateful that she took the steps to work it out. 

But for Ned now, Emily is first and foremost his mum (as the nurses keep reminding her). And mum to our Lucy and baby number three. As a mum Emily is equally as skilful. Before and during our time as parents she diligently read all the books (and helpfully bookmarked the relevant pages for me to read), researched all the gear and made sure we talked to all the people we knew and respected as parents. Like everything in life Emily wanted to do parenting well and still does. She is aware of all that our children eat, monitoring their daily intake of veggies, fruit, protein and dairy. She nourishes their minds too, making sure books are read (almost daily) and that craft, drawing and play are encouraged. She puts out their clothes for the next day, so that her poor husband isn't confounded by choices for them when he dresses them. I could go on...

I'm immensely proud of my wife, she has achieved a lot (have only given the brief account here). With her compassion, care and love for others, coupled with her intelligence and insight, she makes a great companion for this journey that we are on. This isn't going to be easy, I'm already over hospital visits, but I am so glad that I get to travel with Emily on this road. Plus she helpful explains all the medical language that often escapes me, and politely corrects me when I accidentally (and sometimes deliberately) mispronounce the names of all Ned's medications.

Some thoughts (from Emily)...

It's been just over a week since Edward's diagnosis. After being admitted to hospital soon after diagnosis, the last week in hospital has been a whirlwind of meeting paediatric oncology staff, familiarising ourselves with hospital routine, trying to be calm, loving and dependable parents for both our kids, all whilst tracking up a very steep learning curve. I can't count how many times I have wished that I could take this illness, and all its traumatic procedures and treatment, for my darling boy...

And our Lucy, Ned's 5-year-old sister, who has been amazingly cooperative, gentle, tolerant... but yet, the occasional emotional outbursts and meltdowns indicate that, despite her seeming strength, she still hasn't come to terms with the significance of Ned's illness and its implications on our family life.

Her life also seems, unjustifiably, more fragile now to me. Suddenly I only have one healthy child (not counting the one in utero), and a random car accident or another life-threatening diagnosis seems much more tangible and possible than it did before - something I hadn't even considered when she was our only child before Ned was born.

And yet, since we've spent this time in hospital, life has felt surreal and removed. Time in hospital is never nice, but when it's never happened before, there's a "novelty" about it - albeit an unwelcome one. As such, combined with the generous support and offers of help, the reality and chronicity of the illness haven't quite set in for us, I don't think. Driving Ned home on Friday afternoon, in our regular car, to our familiar house, and into our quiet family weekend, I experienced an overwhelming surge of emotions which I thought I'd dealt with... We had to integrate this abrupt, nasty change into our previously "normal" lives.

Despite these fears and emotions, our faith in God is our main anchor and comfort, and it buoys us at all times. We don't necessarily think that He caused or allowed the leukaemia to come about, but we do believe that His hand is in all things, and regardless of what the future holds, He will hold us in the palm of His hands, comfort us and guide us through this unfamiliar territory.

People have said to me: "that's just so unfair for you guys / Ned!" Yes, it's certainly undesired and very unfortunate, but I don't think it's unfair. Ned's been raised and nurtured in a loving, comfortable and happy home, on the whole. In contrast to the children in daily news broadcasts from low-income countries currently, he has not wanted for anything, has access to great medical care, and can be a child, without any major responsibilities disproportionate to his 2 years of age. We have a wide, caring support network - our school, church, friends, family... Really, Ned could not be in a better position to fight this leukaemia, and for this we are ever grateful.

Although these last 9 days have sometimes felt like an eternity, and hospital hours tick by ever-slowly, I still surprise myself several times each day when I remember the reality now: We are Cancer parents. We are a Cancer family. And I dearly hope and pray we will be a triumphant one.

Two Moments with Ned

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...