Ned's confidence amidst uncertainty

Another week begins... another week of hospital appointments, chemotherapy, work, school, my own obstetric appointments, etc. Since each week brings such uncertainty, it's always a fairly chaotic, disorganised, unplanned affair!

Fortunately for us, both children are relatively adaptable with changes, as long as they are consistent and known changes. Ned has developed quite the "charmer" personality, and totters around oncology clinic like he owns the place, ever bearing his cheeky grin, and confidently engaging with the staff, other children and their parents. I think in some ways it's a blessing, really, that he was diagnosed so young, because this lifestyle has quickly become normal and "routine" for him. Had it been 5yo Lucy, she'd probably be more aware of the unusualness and differences of a "leukaemia lifestyle" compared to that of a healthy child, and potentially feel quite cheated when having to forego certain activities and opportunities.

Ned now thrives in his newly-found confidence amongst the paed oncology community at the hospital. Having the same few staff in clinic at every visit means he feels comfortable and at ease, having developed unique jokes, habits and routines with each of them... like his coy wave to Helen... 

As a result, generally, Ned is now perfectly happy to have to visit hospital so frequently and sit contentedly still for bloods and various other tests... most of the time...

Currently, we're continuing on with routine chemo and blood tests, as well as regular heart scans to check on the thrombus in his right atrium - which still seems unchanged and fairly stable. It does continue to worry me - moreso during the nights, and during the times when his heart is working harder, like his screaming tantrums. Since he's such a little chap, the high-risk chemotherapy does seem to take its toll on his blood cells, and they take longer than usual to recover - which meant he had to have more platelets and blood transfused last week. And the all-important bone marrow test (under general anaesthetic) that will determine the direction of our lives over the next 6-12 months has been pushed out till next Tuesday (the 18th) - with still potential to be postponed further if his recovery from chemo this week continues as slowly.

Since this journey began, Seth and I have been increasingly aware of our new inability to plan ahead in any way. I now refrain myself from telling either child about upcoming events or plans, even though half their excitement is born of anticipation, to prevent dashed hopes and disappointment. This, of course, will present a whole new world of "organised chaos" with the upcoming Christmas season. I suppose it's a blessing in disguise that the decision about a Summer trip to Melbourne to see my siblings and extended family has been taken entirely out of our hands... since we don't even know if we'll still be in Tasmania in 2-3 weeks. We may even be celebrating our own family Christmas on a day other than the 25th. I do remember, though, from my time working on the paediatric ward here, that Christmas Day is still a celebratory, festive occasion when in hospital, and the staff do their utmost to brighten the kids' day. 

Some moments of relative peace

We’re nearing the end of another week and thanking God that it’s been relatively smooth sailing with no new hiccups so far. The thrombus (clot) is unfortunately still in Ned’s heart, but they’ve decided that they won’t treat it with anticoagulants (blood-thinners) unless it grows… which, according to the frequent scans, it isn’t at the moment. It’s still worrying, but it appears to be stable for the time being.

Ned’s surgery last week went smoothly, once underway – and we want to thank everyone who supported us in any way during that time of high stress. The surgeon managed to retract the port catheter enough (out of the heart chamber), and found it to be still viable… meaning that he didn’t have to completely remove and replace the entire port (into Ned’s other side). Despite a few timing dramas, we re-started chemo quite intensively immediately post-op, and, although Ned was very miserable and uncomfortable for the rest of that day (Wednesday), he seemed to return to his normal chipper self the next afternoon, once discharged home and playing with Lucy!

This last week, for us too, has given us space to pause and reflect more comprehensively on the seriousness of Ned’s current state and its potential consequences. And fortunately for us, Ned has been most amenable to lots of cuddles, kisses, tickles and laughter – testimony to the resilient, cheerful personality God has given him.

There are aspects about this journey that, believe it or not, have been positive… such as the frequent one-on-one times with Ned, the deepened empathy for friends or patients battling cancer or other hardships, the extended family time… for, though Seth and I worked only part-time so the kids were always home with one of us, we were rarely home together.

But besides the obvious disadvantages of this journey, the more subtle negatives manifest themselves to me as the reduced social interactions we’re able to participate in or host, the exhaustion brought by prolonged emotional stress, Lucy’s occasional (unheard, but obvious) resentment towards Ned for the postponed opportunities or family adventures, and the parenting compromises we’ve had to make (and no, I’m not talking about compromising routine discipline).

For instance, Ned had a dummy that was weaned many months before his diagnosis, but we had to re-introduce it for comfort during harrowing procedures and to administer much hated medication (don’t tell our dentist!). And beforehand, we were fairly strict about a minimal sugar intake and daily outside time for both children – ideals which can’t be adhered to when hospital food and long admissions feature so greatly in our lives.

By now, if Ned were able to walk well and quickly, we would’ve tried, and hopefully succeeded at, toilet-training. And at this same age, Lucy had been participating in music groups, playgroups, a language class, swimming lessons, interspersed with lots of bush walks, playgrounds and beach outings. For Ned, however, we’re very limited with what we can expect of him, expose him to, and his social interactions with other kids his age are few and far between. So our home life has to provide enough stimulation for a growing, curious, adventurous 2yo boy… and, thanks to our treasured Duplo and train set (amongst other toys), we’re not doing too badly!

In some ways, despite my frustrations, this has done us a world of good… because, before, I was “that mother” who always wanted to be out of the house with the kids, doing something productive, useful or fun… which couldn’t contrast more vividly with our current lifestyle. And, even though we (particularly I) still have a great deal to learn, it’s made us slow down a little, take the pressure off, and cherish the simpler moments and interactions with both of our precious children. Initially unwanted, never before has the productivity-vs-idle-fun seesaw been so heavily weighted towards the latter.

Over the next few months, this will be amplified. Ned's become neutropaenic again (expectedly so, due to last week's chemo), and will remain so for the next few weeks. In approximately 3 weeks (conditional to having no further delays), Ned will have another bone marrow test to check if he’s responding adequately to the recent high-risk treatment protocol. As I’ve mentioned before, if this test shows a poor response (as the last one did), we will probably be sent to Melbourne for a likely bone marrow transplant. On the other hand, if this test shows a good result and optimal response, we will stay in Hobart, and embark on 2 months of week-in-week-out of hospital (ie. alternating one full week admission, one week at home) for high-dose methotrexate. Although the latter is the preferred option (given that we’ll still be at home), it will be challenging and brings a degree of uncertainty and anxiety because methotrexate is what caused Ned’s rare dystonic (seizure-like) reaction a few weeks ago. So he will have to be monitored very closely over those 2 months.

Seth and I are continually buoyed by the continued support we are receiving. We had expected that by now, at 3 months in, interest would wane and “sympathy exhaustion” would set in, with people realising that this battle is a long drawn-out journey and we’re really only at the beginning. Thank you to those who have defied our expectations and continue to pray, write to us, cook for us, offer financial assistance, and just generally support us (particularly the anonymous giver – thank you!). It’s certainly doesn’t go unnoticed! 

Another daunting hurdle

As you may well know, the last few weeks have been a bit of a test of our faith, in more ways than one. We know God has never promised to respond to our prayers with the answers we specifically ask for, and we know His will extends far beyond anything we can foresee, comprehend or imagine, but we have sometimes struggled to incorporate that knowledge with our absolutely overwhelming desire to see our darling Edward healthy, with fewer hiccups along the way.

Unfortunately, Ned had a slow recovery from the last round of chemotherapy that was administered over 2 weeks ago, such that a specific test has been sent to Sydney to determine if he’s lacking a particular enzyme that would explain his lag. His young body and bone marrow have had a bit of a battering from the large doses of intensive chemo agents scheduled in the high-risk protocol that he’s following, and thus his neutrophils (infection-fighting cells) haven’t bounced back enough to proceed with the next round.

In some ways, days out of hospital, without having to administer medications and deal with nasty side effects, are quite pleasant and enjoyable. But the flip side is that the leukaemia isn’t being treated, and that’s our ultimate concern.

Unfortunately, yesterday, after thankfully discovering in the morning that his neutrophils had finally risen to an adequate level to re-start chemo, we received most unwelcome news that the routine echocardiogram (heart scan to record baseline heart function) that morning had alarmingly discovered a sizeable thrombus (clot) in the right atrium of his heart. Ned had to return to hospital immediately for another scan to determine more details about the clot and its exact location. Needless to say, we watched him like a hawk all of last night.

Thromboemboli, or clots, in blood vessels often present a management dilemma, which is more amplified in a small child on chemotherapy. The thing is, clots are serious because they can be quite unstable, particularly in the heart, and may cause significant damage by blocking a blood supply or throwing off smaller blood clots that get lodged in the lungs (otherwise called a pulmonary embolus). The treatment is an anti-coagulant (a blood-thinning drug), which, if overdone, can cause the other extreme of excessive blood thinning and bleeding.

In a child as young as Ned, who is already on chemotherapy and frequently requires platelet infusions due to his fluctuating platelet levels, starting an anti-coagulant is quite a risky venture because of their heightened potential to unexpectedly and surreptitiously bleed, particularly in their brains – arguably a greater risk than leaving the clot in situ. This debate is what our oncologist, a local cardiologist, and a few Melbourne specialists are focusing on currently. The general consensus after today is that leaving the clot is the less dangerous option because, from the scans, it appears to be essentially stable.

What caused this, you may wonder? Unluckily, the catheter portion of Ned’s Port-a-cath (the sub-cutaneous valve under his right arm) has advanced itself 4cm into the right atrium (upper chamber) of his heart, and the tip of it seems to have scratched the heart wall over time, which has caused the thrombus to develop.

This catheter misplacement means that we can’t use it in its current state for chemotherapy administration, which means that Ned must have unexpected surgery early tomorrow morning to withdraw the catheter from its current location in his heart, without mobilising the clot itself. If that fails, then he must have the whole Port-a-cath removed and a new one inserted – akin to the surgery he had in week 6 of treatment (which I’ve posted about in an earlier blog entry), which has a fairly prolonged recovery. After surgery tomorrow, we’ll need to get back into chemo immediately to prevent further compromise to his leukaemia treatment.

So this is the next challenge. I’ll be taking Ned in tomorrow morning for his surgery, since Seth and Lucy will be at school. Please uphold us in your thoughts and prayers, since we’re all rather anxious and emotionally exhausted at the moment. All of your encouragement, support and ongoing messages have been so appreciated! 

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