In all honesty...

Did you know that, despite fairly good prognoses and survival rates for childhood leukaemia in this day and age, long-term morbidity is common? Did you know that, if Ned survives till later childhood, there is a great possibility of extensive learning difficulties and neurocognitive deficits (from intrathecal chemotherapy and frequent general anaesthetics)? Did you know that adult survivors of childhood leukaemia have much higher rates of secondary cancers, obesity, infertility, cardiovascular disease, respiratory illnesses, endocrine disorders and fatigue? I know it’s morbid, but I’m a realist and sometimes a cynic (in stark contrast to my husband), and my medical training always intervenes when I least desire it. These are the potential realities of the life Ned will lead, and in order to best support him through the years ahead, Seth and I have to deal with the grief these possibilities bring us now.

People often comment on how well Seth and I are coping, or how strong we are in the face of this life-threatening illness in our family. The definition of “coping” is “dealing successfully with or handling a situation; managing”. In all likelihood, living in this social media-focused world, many only get to see the “published” face of tough journeys – the smiling photos, achievements, and happy anecdotes.

But let me first dispel the myth and frequently-heard compliment that I am an unusually “strong, resilient mother” (and I’ll speak for myself because my darling Seth really is my rock). What Facebook and this blog possibly don’t convey are those many times I abandon myself to gut-wrenching tears in a foetal position on the floor of our bedroom; or those times when I snap impatiently at the kids or Seth; or those times when the negative (and irrational) thoughts about the “unfairness” of Ned suffering intrude; or even those times when I go into social shut-down, and can’t even bring myself to interact with anyone in any way because I know my vulnerabilities are so raw at the moment. This is not just because of the initial diagnosis of leukaemia… because at that stage, despite the enormous blow, we were both coping fairly well and trying to exhibit some kind of strength in how we dealt with it. Ultimately, it’s because of the constant and successive blows we’ve had since that have just worn me down… and I can tangibly feel my emotional reserves and resilience being depleted by the week. Now, as I alluded to in the last blog post, I find it an uphill battle to hold the tears at bay when I’m simply discussing Ned or how we’re faring with anyone.

But how would I not cope? How can a pregnant mother of 2 dependents not cope? I used to be one of those Mums who would thank the Lord several times a day for the kids’ health and able bodies, and, when reading the blogs of grieving, struggling parents about their journeys with their chronically ill children, would shake my head in sorrow and wonder how on earth they “coped” and continued on with their everyday lives. And now I know… Because when you have children relying on you every single minute of every single day, you just have to manage. You re-set your mind and put one foot in front of the other – quite literally, with often a stumble into the arms of a spouse or partner. It’s a rocky, dangerous mountain hike, and you can only get to the top by taking each step at a time, climbing one boulder after another.

Please don’t mistake me – I am definitely NOT writing this as a cry for help! To get to this point, I’ve already had to admit to my vulnerabilities, come to terms with the situation, and talk to people. I have a history of depression, and treat it in patients. I know its signs well, and I’m not in that place – for which I’m abundantly grateful. I am just re-acknowledging the enormous impact and toll that stretched emotions and exhaustion can have on a person’s and family’s wellbeing – to a far greater extent than I’ve ever had to before.

And when I’m sensible, clear-thinking and have had a reasonable night sleep, I then think of how blessed we are that Ned is even living in a country like Australia, where he can access such superb treatment of this nasty disease… while I know that where my parents are living, in Congo, children with leukaemia wouldn’t get a second chance. These facts certainly don’t make me happier or more content about the journey ahead, but they indubitably and decidedly remind me of the many unseen blessings we actually do have in our lives.

Our “mountain hike” and buoyancy are of course boosted by our faith, and the little moments along the way – the childrens’ joy and laughter during play, Ned’s funny little comic routines and incredible resilience (still smiling, crawling around on his casted broken wrist), the hugs we get… not to mention (as I often do) the generosity from others. And may I just take this opportunity to both acknowledge and again show our immense, vast appreciation to all the named and nameless donors – the vouchers, the cash donations, the online donation into our bank account, the nappies on our doorstep… we are so profusely and deeply grateful for the generosity, kindness and love this shows us, alongside the many, many words of encouragement and prayers. 

The week that was...

This last week has been a challenging week... although, in all honesty, as pessimistic as it sounds, we have come to expect a fresh challenge every week recently.

Last weekend, we nearly made it to the end of Sunday without any major medical dramas - even though we've been cautiously awaiting another infection since Ned's still neutropaenic, and it feels like we've really been enjoying borrowed time out of hospital! Disappointingly, on Sunday evening, we noticed Ned started restlessly moving around a bit more, like he was just tired, but he was worsening within about 10-15 minutes. When we picked him up to settle him down, he had jerky movements and was involuntarily thrashing with flailing limbs, throwing his head around, arching his back. After discussing it over the phone with a doctor at the hospital, who didn't have any idea what was going on, we decided to prepare for a hospital visit and likely admission - during which, things deteriorated further. We couldn't hold him still or restrain him, and both my "medical" and "parental" anxiety was soaring. I knew it wasn't a seizure, as such - he was still conscious, answering my questions, making eye contact, but he was distressed and unable to control any movement. He stopped suddenly at about 70-75 minute mark, to our great relief. We took him into hospital anyway, thankfully, since testing showed his platelets were rock bottom, thus needing another urgent platelet infusion. They admitted Ned for observation overnight. 

The next morning, though our paediatric oncologist wasn't entirely sure what the answer was, Ned was discharged home since he'd been stable overnight and his platelets had been topped up. Just as we were about to leave, however, he started having another episode, which the doctors then were able to observe. With a normal MRI brain (the next day), and everything else ruled out, it has now been labelled a very rare dystonic reaction to the intrathecal methotrexate (a chemo drug) Ned has been receiving weekly, under general anaesthetic. Dr John (our paed oncologist) has only seen one case of it before in his career. This, along with all the other "unfortunates", "bad news", and "rare reactions" we've experienced over the last 2-3 months is why we're becoming disheartened and more pessimistic. 

Ned (and Seth) had to then stay on that day and night... coinciding with Lucy's planned adenotonsillectomy. I raced home, packed, took her into her hospital, and stayed with her for the operation, and overnight... making for an unusual situation where both Seth and I were in separate hospitals with each child for one night! We had a few video phone calls as a family over the following 24 hours. Needless to say, our dramatic, sensitive, quality-time-loving eldest child absolutely adored her one-night admission with the entailing attention and care, especially having one-on-one time with Mum - and the beautiful ballerina doll made and dropped off for her by a generous, creative woman. She seemed to think the nurses were there purely for her entertainment and social life. Although in a lot of pain ("Mummy, my brain hurts!!"), she enjoyed having very rare movie-watching time, nurses bringing her unlimited ice cream and jelly (even at 6am the next morning!), and, much to my amusement, she thought the most delicious meal she'd ever tasted was the white-bread-and-cheese-sandwich-and-tinned-tomato-soup delectable combination she was brought for dinner. 

Post-op Lucy "smile" in hospital

Cheeky Ned "smile" in hospital

Fortunately, she's recovered very well. The surgeon showed her the adult-sized tonsils he'd removed, and reported fluid in her ear (which he drained) and a nasty left sinus infection - the answers to her ongoing congestion and deafness. She's still in some pain, but MUCH less nasal-sounding and sleeping silently. For us, we're thrilled that her behaviour has done a 180-deg turn! She's been just so lovely and sweet the last few days - possibly aided by a lot of one-on-one time with me. 

My pregnancy, being largely ignored, is progressing smoothly as well - something we're enormously grateful for at this time. Vomiting has stopped, nausea has eased, and the kicks are frequent. I'm over halfway, and having my formal ultrasound this coming week (slightly later than required) - and for all of you want to know: no, we're not finding out the gender (just like our last two)... we quite like having a surprise at the end. 

Even though we're housebound, we were very blessed to be able to spend a few days away "housebound" to a different house, courtesy of some very generous friends, approximately 45 minutes drive from hospital. It was near a beach, and despite the strict instructions for Lucy not to swim post-op, and Ned's water-incompatible plaster cast, we enjoyed some idyllic, sunny beach walks and quiet, uninterrupted play time. We were very tentative about going away, given Ned's susceptibility to infection and probable need for admission, but fortunately, during the few days we were there, only one morning's hospital visit was needed. 

Champion Lucy at the top of a sand dune

A very happy boy!

This week, Ned's starting back on a rigorous chemo fortnight, returning to the daily injections of a vomit-inducing medication, administered by Seth, and another medication that wreaks havoc on his cell counts. I'm also returning to work (tomorrow), on only minimal hours - to fit into chemo schedule, upcoming admissions, and the need for one of us to always be at home. 

Having had time for some self-reflection over the last week, I've been able to take a breath, and consequently my (pregnancy hormone-fuelled) emotions have been rather unhinged... even just talking to friends has my eyes prickling. There is little in this world that compares to watching your own child suffer... it hurts every minute of every day. And, as his devoted parents, all we can do for him, other than prayer, is to enfold him in our profound love. 

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.