Ups and downs

Well we've managed to successfully spend 5 days out of hospital WHILST NEUTROPAENIC (meaning no infection-fighting cells)!!! An occasion worth celebrating... well... given that we make it to the end of today (Sunday) without a temperature...

Frustratingly, it's been both kids' "normal, developmental" behaviour which has been causing us the most grief and challenges over the last couple of weeks. Funnily enough, cancer does not thwart the path of "terrible twos" and their associated headstrong stubbornness and violent tantrums! Likewise, our eldest seems to be constantly terribly tired and grumpy, and, despite her mere 5 years, acts like she's going on 15. Her worsening behaviour, noticeable deafness and obstructive congestion over the last few months has forced our hand in booking her for a strongly-recommended adenotonsillectomy, with possible grommets, next Monday (the 29th) - the first day of our Tasmanian school holidays. I think we're perhaps pinning overly wild hopes of miraculously transformed behaviour and drastically improved weekends at home once she's had the operation!

Ned's now completely bald, after I was convinced it would look better than the head of wispy, straggly strands he previously sported, and fortunately, his skull is nicely shaped! :) The hairlessness is a characteristic he seems proud enough of to boast about, especially to his similarly-bald paediatric oncologist - a joke they often share, whilst touching each others' heads. The port wound under his right arm has healed quite well, and, although the routine bi-weekly access is still fairly traumatic, he's adjusting to the routine of it, and happily familiar with all the staff involved in his care - which makes hospital visits much more bearable. For now, he knows no other life (or vocab) than "medicine", "port", "hospital", "nurses", "doctors", etc - strange for us, considering he was a previously completely healthy, robust child with no medical complaints or need to even visit his GP. 

Since Ned's so immunocompromised and, thus, house-bound, Seth and I are becoming much more adept and capable of entertaining both children at home - a task that's been made inordinately more manageable with the beautiful, sunny weather, our trampoline, and the completion of Seth's "birthday deck", built by him and a builder friend primarily, and helped along by some good mates on a workday. 

This is, in part, compensatory for our inability to have family outings, market visits, and social activities. Seth and I dearly miss being able to go to church together, have friends around for meals and play-dates, and take the kids on adventures. We long for a Melbourne trip to visit family and friends, a child-free night, or even just some child-free time together, a peaceful resolution to a stressful situation with a neighbour; and I, especially, yearn for a night of unbroken sleep with no fears or anxiety about the future, and no daily gut-sinking, sudden realisation that our child has cancer. Thankfully we both have coping and sanity-preserving strategies - like my regular runs or gym visits, Seth's occasional cinema evenings, and our evenings together once the children are asleep. 

Negative as it sounds, this is my honest account at the moment. Despite having a strong faith that we are in God's hands, we both still have our human fears and failings - many of which are being exposed whilst navigating the battlefields of parenting 2 very strong-willed children - whom we both love beyond comprehension. Although it feels like a very lonely journey when tossing and turning at night, we know we are not alone in it. We are reassured of this in every loving hug, encouraging message, delivered meal or baked goods, and offer of help. 

The lights at the end of a darker week

I’m sorry I’ve taken a while to do a blog update this time… I’ve actually been struggling a bit with my emotions and how to articulate things into words on paper, to be conveyed to such a broad audience – of parents, non-parents, extended family, close family, close friends, distant acquaintances, and people we don’t even know personally.

The Isham household is travelling along fairly smoothly at the moment… although emotions have been labile and fragile.

Ned started high-risk treatment last week, and it went relatively ok. The time at home was fraught with stress and tears though, since, most days, as well as the in-hospital chemo, Ned’s had to be given subcutaneous injections by Seth (which Seth found traumatic), and take 6 doses of oral medication – all of which are crushed pills, and each of which has to be forced into his screaming, struggling body. It’s horrendous for all of us. Ned used to eat, when on steroids. Last week, whilst on a temporary break from the “hungry” steroids, and having to take a nausea-inducing medication, he refused food most of the time. I could have counted on one hand the number of food items he’d eaten over the course of the whole week… which thus made sneaking crushed pills onto a spoonful of food an impossible task.

               3 weeks difference

Seth and I are still emotionally drained. We’ve been gradually educated about what exactly high-risk treatment entails, and it sounds fairly intensive, grueling and daunting, so we’re a bit uncertain about how we’re going to cope for a sustained period. I, particularly, am also overwhelmed at the prospect of our baby’s arrival in February, given that we’re already flagging.

Consequently, for all of last week, my tears were prickling at the drop of a hat. My inability to suppress my negative thoughts at every hour of every day (and night) has led to very little reserve to cope with other sad or disappointing news. I used to be the kind of person who would overly invest in the world news; trying to fully immerse and intimate myself with the victim’s suffering – so that, even though my grief could never come close, I could perhaps sympathise with a fraction of their pain. I am under no illusion that I am unique in this, but for me, I do think it’s perhaps remnant from the tremendous guilt I’ve felt since we returned to Australia after leaving our Congolese friends behind to an uncertain future and great potential suffering in such an unstable country.

Now, though, I can’t bear any bad news. I can’t bring myself to watch the news broadcasts or browse the World section of the newspapers. I guiltily block my ears to the suffering or atrocities happening in Iraq or Syria. I refuse to read about the children killed in NSW recently, or the kids dying as a result of parental neglect. This is temporary, I know, and will dissipate as treatment becomes more established and we adjust to the routines (or lack thereof); but at the moment, I just don’t have the energy and emotion to expend in grieving for others.

One must not forget, however, our many abundant blessings and reasons to be thankful - such as the ongoing wonderful support from family, friends, neighbours, acquaintances and colleagues, Ned's first few independent steps, returning cheerful nature and mischievous, cheeky grin, Lucy's very maternal, gentle, and loving character, the occasional moments of family fun, laughter and sheer delight with each other... And lastly, our weekend was considerably brightened by my visiting sister and brother-in-law from Melbourne, as well as our involvement in our first Light the Night event (run by the Leukaemia Foundation) on Saturday night at an animal sanctuary – an event where sufferers and supporters gather together to have a BBQ, catch-up, and walk with lanterns in the dark in order to raise money for the Foundation’s research efforts. Our team ('Team Isham') has managed to raise over half of the Tasmanian total (at this stage!) – thanks to so many of supporters and well-wishers. There’s also a 'Team Isham' branch walking at the Melbourne Zoo next week, which is similarly raising money for the Foundation. Even though this event wasn’t about us, as such, it was so encouraging and uplifting to have so many of our friends make the effort and bring their families in our support – we felt very loved. 

So, in this vein, let me reiterate that the MOST valuable of gifts are your prayers and messages of encouragement. Knowing that so many people have us on their hearts or in their thoughts is really reassuring. And, when my prayers are weak and faltering, or sometimes non-existent, knowing that others are interceding for us is incredibly powerful and uplifting.

Many of you have asked what else you can do, help with, give and send. Often we don’t have answers for this, because at the moment, I’m pretty sure the kids both would prefer quality time with Seth or me, and Seth and I would often just prefer time for to-do lists or sleep! The delicious “train” of meal deliveries, that is ongoing, is enormously helpful; and whilst the toys, DVDs and books that have been sent have been very excitedly received, if you still want to give in some way, please consider donating to the Leukaemia Foundation. If this is too impersonal or general, and if (and by no means is this a request!) you still would like to help in some way, we are most graciously appreciative of Coles/Myer/K-Mart vouchers (or the like) to put towards grocery and clothing purchases when needed.

If you'd like to contact us for any reason, Seth can be reached at seth.isham@gmail.com, and I use the address isham.emily@gmail.com. 

This is your life....

A: "So what's it like?"

B: "You know the cliche a 'rollercoaster ride'?"

A: "Yeah. And emotionally?" 

B: "There were tears at first, couldn't talk much at all. Then numbness, then tears when people said nice things, like 'we're praying for you' or 'we love you guys'. But there were times of resolve too, of some unrecognised inner strength, where other people cried more then we did. I was also numb too, and often just flat and down with no tears. Was hard seeing him lose his hair." 

A: "I guess that was a visual reminder of what was happening in his body, right?" 

B: "Yeah, and the irony was I've always wanted to cut his hair!"

A: "What do you feel now?" 

B: "I don't know, it's a strange in-between feeling... kind of numb and sad, but don't feel like crying. Only days ago I felt immense joy. Since the steroids are gone, over the last week there has been so much joy in him, and it's contagious. His laughter lights up the home, his joy is a salve for the soul. He blesses everyone with his happiness."

A: "I'm smiling thinking about it." 

B: "He's cheeky too, making faces, and a whole repertoire of smiles, most of which break into laughter. I think it was his joy that helped us through the dark time of his colic year as a baby." 

A: "And helping you now!" 

B: "I guess he doesn't really know what to feel either - he's too young. He just cruises on, responding as only he can to whatever they throw at him. I think he's adjusted better then we have. We have to keep checking ourselves and think 'so this is what our lives are like now, our son has leukaemia and he's got to get through horrible chemo'."  

A: "And how did you take the latest news, the bad recent MRD results?"

B: "I thought I'd be more upset. But maybe my lack of medical knowledge (compared to Emily) prevented me fully understanding the impact of the news. Or maybe God has given me some inner strength to support my family during this journey. Or maybe more increased doses and number of chemo agents, in my mind, doesn't differ from the chemo he's already getting. It's horrible, but I know it will cure him. God made me an optimist, maybe even an idealist. Maybe I have too much hope. But I have to believe that He will take us through this.

You know sometimes I worry that I'm not allowed to show joy and happiness because my son has leukaemia."

A: "But people grieve differently... You're at the epi-centre, you travel right there beside your son, you experience his daily joy and tears. Others are more removed, or they have different ways of relating to this tragedy and contextualising his suffering."

B: "I guess there are practical responses too, people cope better if they can help."

A: "You've been so blessed with help and support." 

B: "I know! Although I wish I could get help with things that can't really be given. I often wish sleep could be given in units, so that I could be given enough to get up every night to Ned, and to get up early so that my pregnant, stressed wife could sleep in every morning. With enough sleep, I could be more selfless - I feel could serve my family better."

(Pause)

A: "So this is your life now..." 

B: "And I'm living it one minute at a time..." 

Seth

A most unwelcome complication

Since this journey has begun, it has all been tumultuous, uncharted territory for us. And only occasionally do I feel like we’ve achieved some sense of normalcy or stability along our not uncommon road fighting a “typical” leukaemia.

Today, for the first time since Ned’s diagnosis, our boat was well and truly rocked. Emotions I’d thought were dealt with made a resurgence, and suddenly everything seemed shaky and uncertain again.

You see, during his general anaesthetic last week, Ned had some tests done, mostly to check his bone marrow and whether he had responded, as hoped, to the Induction phase of his chemotherapy regime. He was showing all the physical signs of responding well, and his neutrophils had recovered as predicted, so everything was looking favourable.

Today we got his results, which negated all of that. They showed that, although he has certainly responded well to the chemo thus far, it hasn’t been as “optimal” as hoped. Consequently, without any change to his current treatment or upcoming treatment protocols, he is at high risk of having a relapse in future.

He now faces a much more intensive next 5 months, with more grueling and “toxic” chemotherapy, and the possibility of needing to go to Melbourne for treatment and a bone marrow transplant (Lucy is our only option, so will be tested). This latter step will be dependent upon another bone marrow test in 4 weeks’ time (after 4 weeks of “high risk” treatment).

Suddenly we’re no longer tracking along the usual, “routine” leukaemia path anymore.

It’s definitely a low point for us… if one can get lower than having your child diagnosed with leukaemia in the first place. Seth and I both realise that there is the possibility of many hurdles along this journey, but we hadn’t expected them so soon, and to be perfectly honest, we feel like we were just starting to recover emotionally from that initial shock. I, personally, am drained. I just realised today how deplete my energy reserves are (early, I know), given the concurrent hugely heightened stress (from exams) and nausea (from the pregnancy) of the last few weeks. This next month of waiting for the follow-up test will need a lot of prayer and encouragement, I think!

Fortunately, we have Seth – a pillar of strength for our family, and my ever-forgiving, tolerant, endlessly-patient, kind and loving husband. And thankfully, our 8 years of marriage and friendship has steadied us for the trials and stresses ahead. But we’re aware of what challenges like these can do to families, to marriages, to sibling relationships, to mental health… So, for now, for the unknown ahead, for the lack of strength and energy we possess, for the horrendous chemical assault on Ned’s little body, we commit this journey to our Lord. 

Post-steroid and post-op Ned

This last week has brought juxtaposing emotions – apprehension and relief. Ned had surgery on Wednesday, and he was under a general anaesthetic for nearly 3 hours – a period which did not pass quickly for me. As I explained during my last blog entry, during that time, he had some bone marrow tests and had a port inserted just under his skin (between his right nipple and right arm) to enable chemo administration from now on.

The surgery itself went smoothly, but Ned’s post-GA grogginess took a while to wear off, and when it did, the pain and discomfort upset him and he struggled to move at all for a good 24 hours.  Neither Seth nor I had given much thought to the fact that we still have to lift and carry 15kg-Ned for everything, and now he has a very painful surgical wound just under one arm… which makes mobilising him and transfers quite challenging!

He seemed much brighter the next day, and consequently, he was discharged from hospital – to our delight! Lucy was excited that we were all able to travel home together, and Ned was smiling for the first time...

Which brings me to the other emotion: relief. Ned’s month of steroids ended on Monday, and what a reprieve it’s been for us all! One doesn’t quite understand the nasty effects of steroids until your own sweet, kind-hearted, cuddly child turns into a little, depressed monster. Ned’s old personality was entirely consumed by constant angst, irritability, lack of focus, emotional lability, and voracious appetite for several weeks… which was exhausting and emotionally draining. He ballooned by 2kg in 3 weeks from the steroid effects, the lack of any exercise (from steroid-induced muscle weakness and bone pain), and the overeating – weight that will invariably come off over the next few weeks.

This last 4-week steroid course finished on Monday, and by Thursday morning, Ned’s giggly, cheeky, smiley self was seeping through the post-anaesthetic haze and surgical discomfort. Friday, spent at home, was one of my most pleasant parenting days in recent history. Ned’s brave disregard for his ongoing pain, cheerful personality and enjoyable companionship brightened our household considerably. He laughed hysterically at my “jokes”, happily played with Lucy, chatted amicably over a (reasonably-sized) lunch, and actually napped properly!

 The pleasant evening we had as a family was documented with some simple iPhone photos and this video (below), because we want to commit these moments to memory – since this atmosphere is not permanent. We cannot lapse into thinking “he’s done; the tough stuff is over” – which I’ve nearly done a few times. No… this is a mere reprieve. This illness he has is not just a 6-week illness from which he can be so simply cured. In fact, for each of the next 3 weeks, Ned will have a general anaesthetic so chemotherapy can be injected into his spine. Steroid weeks, hospital admissions, awful chemotherapy, and nasty infections will play a large, intrusive role in our lives for several years, and there will be repercussions for many years to come.

 But it’s day by day for now… just day by day. And these days are just beautiful.  

Emily

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.