A day at home

With many thanks to our lovely friend, Lisa Kuilenburg, for these beautiful photos. 

Settling in...

So we've come to the end of another week - Week 4 of treatment. Come Monday, Week 5 begins - a milestone signalling the completion of the Induction phase of treatment (to hopefully bring the leukaemia into remission), but also a week of apprehension and jitters because Edward will be having surgery on Wednesday morning. This surgery is to do another bone marrow test, check his response to the chemo thus far (and make sure he IS in remission), and insert a "port" - a steel valve under his skin (just lateral to his right nipple), to enable more simple blood access and chemo insertion from now on (rather than needing constant needles and IV line insertions at every hospital visit). It is routine to wait till Week 5 for a port because, until now, until they're in remission, leukaemia patients often have unstable platelet levels (causing coagulation problems which wouldn't be ideal for surgery) and very low neutrophils, making them more susceptible to surgically-acquired infections. As it is, with Ned's neutrophils now actually existent, his risk of infection from this port insertion is 10%.

This last week however, other than routine tests and chemo in the paediatric oncology clinic, has been spent at home, being treated to glorious weather and sunshine. Unfortunately Ned, still being on steroids (one of the chemo drugs), has continued to be agitated, irritable, unsettled, moody, lethargic, weak (still not walking), sleepless, and very, very hungry - which has certainly tested all of our patience, stamina and muscle strength! We're all keenly anticipating the few upcoming weeks' break from steroids!

The other low this week, which was most unwelcome, was Ned's rapid hair loss. It caught us quite by surprise because we'd been warned it would happen as a side effect of a chemo drug during his 3rd month of treatment. Watching your 2yo son wake up with a progressive patchwork baldness every morning is quite disconcerting and upsetting. As a friend pointed out, though, it does mean the chemo is working, and that is somewhat reassuring... and it means the vacuum cleaner has a constant presence in our living room- a rare occurrence!

Some things that have changed in our lives since this leukaemia journey has begun:  

- Our medicine cabinet is now overflowing with medicines that Ned despises and screams at the mention of, and our weeks are filled with hospital appointments, and often, unplanned hospital admissions.

- The previously non-eating Ned is now quickly emptying our pantry and fridge (although our freezer has never been so full of delicious meals, so generously cooked by friends and family).

- We can no longer use our cloth nappies with Ned because chemo produces toxic waste. Rather, we now have to glove up and throw his disposable nappies into a purple 'toxic' bucket that, once filled, we take to hospital for incineration.

- Our lives are much less social, and any family outings have to be mostly on our own or to largely-secluded locations.

- There's now, sadly, no longer a need for us to save money for a family trip to Africa next year, mainly for a visit to my parents in Congo.

- We are now focusing on continuing our lives and work here in Tasmania for the next 4 or so years, rather than training as missionaries next year, learning a language, and then heading overseas to live and work long-term - which in itself brings some grief, since the desire to work in a resource-poor setting is why I studied medicine in the first place, and is also why I've worked so hard over the last 6 years to finish my DRANZCOG (Diploma of O&G), my Masters of International Public Health, and currently my FRACGP - the final GP qualifications, whilst starting a family. Seth, too, had been keenly anticipating putting his newly-acquired International Baccalaureate teaching skills to good use in another country.

- Seth and I now crave the 7pm kids' bedtime like never before! 

- I'm currently having a few weeks' break from work, and am quite missing adult interaction and the brain stimulation that provided (although I'll be the first to admit my brain is currently not nearly as functional as it was before!).

- Lucy can no longer have friends around for regular play dates, and seems to be showing a few signs of frustration with our changed lifestyle... although she's thrilled with the endless supply of presents and baked goodies in stock!

- Ned is no longer your typical little boy - he doesn't want to be outside, he doesn't like playing with Lucy much, he's not mostly cheerful, and he doesn't run away the instant he's released... On the contrary, Ned only wants to be constantly carried and cuddled by his Mum - mostly possible currently, but perhaps not so much in about 4 months' time, when there's a heavily-laden belly for me to carry as well!

- Lastly, I've found people no longer want to tell me about their challenges, tough times or recent family illnesses, which can make conversations a bit leukaemia-focused and one-sided... Let me assure you that we WANT to hear how your lives are going, tough times and all! We know what it's like - we've done 5 years of "ordinary" routines, family-work juggles, insomnia, snot, vomit and diarrhoea. It's still a challenge being any parent sometimes, and us having a child with leukaemia doesn't detract from your struggles.

Some Big Questions

Recently, Seth and I have both encountered some people who are mystified, and even quite angry or disillusioned with the concept that there exists a loving God who would allow an awful disease, like leukaemia, to happen to a child – specifically our Edward. So we want to address these questions, and explain why we believe in God, and why our faith is still unwavering despite Ned’s recent diagnosis.

For us, God's existence is an unquestionable truth, regardless of how our lives are going. We live on this broken, nasty earth, containing immeasurable suffering, because of our own (ie. humans') wrongdoings and our surrounding crumbling physical world. Just because we're Christians, we are not immune to this. Look at Iraq at the moment - the suffering of the Christians there far outweighs our own battle with leukaemia.

We don't believe in 'karma' - where good things happen to good people, and bad comes around to those who deserve it. If we believed that, are we saying there’s a reason for all the suffering of innocent Ned and so many other children around the world?!

Seth and I don't claim to fathom or comprehend the reasons why this has happened to us or Ned, but we also realise that God is far greater and more infinite than any human can imagine, and His "reasons" for bad things happening may never be revealed. And we're ok with that, because we each have had a nearly-lifelong relationship with Jesus, accepting that we've been saved by His death and resurrection, and are loved unconditionally, despite our faults, weaknesses, doubts and less-than-virtuous character traits. We know His love, care and concern intimately - just as most children know of their parents' devotion. He promised that if we believed, we would be saved, but He never promised that we'd have an easygoing, happy life without suffering. 

I don't condone or ask for suffering... nobody wilfully wants it in their or their families' lives. But often, brokenness and ruin can be used to cultivate more resilient and empathetic individuals, to bond relationships, and build stronger, more supportive communities – as we’ve both certainly experienced during this horrific last month with Ned.

Still, through all of this, though we both have so many unanswered questions, we still cling to the truth, comfort and hope that the God of this entire universe provides. Seth and I have certainly experienced anger and confusion about why our darling boy has to suffer, but we certainly don't blame God for what has happened. I don't know where I'd be if I felt like everything depended upon me, or Seth, or Ned, or our healthcare providers - we're all only human. Knowing that there is a higher being who has created us, knows us each individually, who rejoices with us during our successes, and who grieves and hurts alongside us when we are traversing the darkest of valleys, gives Seth and me a hope that transcends and far exceeds any despair we harbour. And at the end of it all, when everything is finished, we do trust that we are destined for a place where there are no tears, no pain, no brokenness, and all suffering has vanished – such comfort to our aching hearts at this time.

Neither of us presume that if we believe more or pray "hard enough", all will be resolved or come right. We don't presume that this leukaemia warpath will necessarily be smooth or end well. Rather, we know that whatever the outcome is, and however nasty and awful things are along the way, we will be carried and comforted by our Father, who has Himself grieved for a suffering child.

So then, where is God in all of this? He’s in the love and immense support we’ve received from our friends, family, church, neighbours, and work places. He’s in the relationships that have been forming and strengthening because of this adversity. He’s in the bonding we each have with Ned because of all the time we spend with him in his vulnerability during treatments and admissions. He’s in Seth’s and my conversations and the topics we’ve been able to broach in our marriage because we have more intense time together. He’s in Lucy’s questions, her growing understanding and sympathy, the blossoming sibling relationship. And He’s in our story, which may one day, in some way, touch people far-reaching and unknown to us. 

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