Joy amidst the mundane

I am at a bit of a loss about what to write this time… how to update you on the fairly mundane, routine, clinical lives we lead at the moment. Being on school holidays has allowed Lucy (and Seth) a bit of rest, but hospital admissions don’t “break” for the Summer, and Ned’s side effects during and after these stays have certainly dampened our joie de vivre and usual holiday adventurousness. Fortunately, daily play dates for Lucy with close friends have allowed her to not bear the burden of long hospital days, and the love she has for her dear little brother is very evident in the way she greets and plays with him during her regular visits.

Unfortunately, as I mentioned, Ned’s sensitivity to his chemotherapy medications has continued, with ongoing unexpected side effects. We got some answers this week, when a test result returned from Sydney showing that he lacks an enzyme involved in the metabolism of chemotherapy. Whilst this has no long-term bearing on his prognosis, it does mean that the road there will be tougher and longer because the doses become more toxic in his little body, causing continued over-sensitivity and slow recoveries from every round of chemo.

As you’ve probably seen, however, from the many photos and videos I’ve posted over the last few months, despite his oft-felt misery and discomfort, his underlying resilience, cheerful nature and cheeky smile often emerge and buoy him and us – ever aware that there is little we can do but continually show our steady, unwavering love, affection and compassion, and commit him to God’s hands repeatedly.

However there are some very delicate balances to be sought in this journey of parenting such a vulnerable child… ‘Tis a fine line between being cautious and being too over-protective or overbearing, for instance; between fear and realism; between encouraging a reluctant eater to consume his dinner and plain force-feeding; between appearing as a resilient, confident, tenacious parent (as always hoped) and becoming an emotional wreck; between being full of cynical resentment and being grateful for the small blessings… And these challenges are the ones I, particularly, am struggling to master. Because, to be perfectly honest, even now, nearly 6 months in, Seth and I still sometimes have to pause in disbelief, take stock, and re-assess what has become of our “healthy” family and life plans. It was a life, led by two very internationally-minded parents, very nearly headed to a developing country so culturally disparate to Australia; and yet now, we have been advised to plan no overseas work or major travel for at least the next decade…

Now, the course of Ned’s disease determines the journey our family takes, and the joy or grief we experience throughout will most probably always be tinged with an element of regret - which, my dear husband (of 9 years on Wednesday 21st!) is able to adopt more optimistically than me. Some of you may be familiar with tracking such a rocky path in some way, to a certain extent; and know just how to forge on whilst remaining faithful, and seemingly embracing the unfamiliar and uncertain… 

The results are in...

This blog post is quite late, yes, but chemo, hospital life, nasty side effects, and end-of-school formalities have had our family life quite disjointed and chaotic over the last few of weeks. The good news, though, is that the result of that bone marrow test was clear, which means that the high-risk chemotherapy is succeeding in Ned’s body, and, at this stage, we don’t have to upgrade it to a trip to Melbourne for a bone marrow transplant, and long-term more intensive treatment - praise the Lord! That was a daunting scenario that Seth and I had discussed many times, and had never been able to generate any plans as to how we’d manage it - ie. who would go with Ned (given that the baby’s due in February), would Lucy come initially, how would Lucy and Seth re-start the new school year here at the end of January, etc etc. Thank God we no longer have to ponder this challenge for the time being.

But back to reality… Given that we’re now staying in Hobart, we’ve had to start Ned on the 2 months of fortnightly week-long hospital admissions for high-dose methotrexate (a chemo drug), and various other chemo agents. He’s just completed his 2nd week of it, but unfortunately this drug gives him nasty side effects. After discharge from the first week's treatment, I noticed he was refusing to eat, and his lips were occasionally bleeding. I looked closer, and noticed that the inside of his lips and all the skin inside his mouth was blistering, peeling off and bleeding… a nasty case of “mucositis”. It was dreadful, and he was in so much pain, he couldn’t eat, and could barely drink and swallow. Paracetamol didn’t help, and the mouth ulcer topical ointments and mouth washes stung the raw areas so much that they did more harm than good. We managed over the weekend, but Ned’s oncologist on Monday nearly admitted him for IV morphine, fluids and nasogastric feeding. Fortunately, Ned’s resilience, ability to continue sipping water, and our prescription of some stronger painkillers for home enabled us to keep him out of hospital for the subsequent few days while he healed. Unfortunately, this is likely to happen again after every admission for this methotrexate (which will be every second week till the beginning of February). Now that we’re aware of this potential though, we’ve put some things in place to prevent it becoming as serious and as painful for him - such as an extra day in hospital before discharge for infusion of a reversal medication. 

Other than that, our days out of hospital were relatively pleasant and joyful - celebrating Lucy and Seth finishing up the school year, with award assemblies, concerts and other outings. We didn’t take Ned to many of them, but his good neutrophil count enabled him to get to a few - which he hugely enjoyed. His cheerful nature, despite the ordeal he’s enduring, is a lesson to each family member, and we’re abundantly grateful that his precious older sister is so loving and generous towards him.

- Emily

 "The City of Ned" - Seth

To help my own visualisation and understanding of Ned’s cancer journey I thought up an analogy. It helped Lucy understand a little, although I may have also confused her more. If you’re an imaginative, creative sort like me, maybe this will help you too.

I imagine Ned as a city. A joyous, happy city, even while rebel factions began to take over and weaken the city from the inside. When other more powerful cities learned of this terrible almost-total takeover, drastic measures were taken, extra forces deployed. But the drastic measures took their toll on this beautiful city, and while in part the citizens recovered, there were side effects.

Agents assisting the recovery efforts in the City of Ned conducted searches and found rogue elements of rebels hidden in secret places around the city. So the battle continued, now with greater ferocity and with collateral damage for all the citizens. There were fears of greater military action - fears that if they didn’t stop the rebels they’d need to burn the very streets to drive them out. But then a messenger came - it was good news, the rebel forces had retreated out of the city, for the moment.

But the battle is not over.

As so many have asked after the good news of Ned’s bone marrow test: “is he cured now?”. Sadly, while yes we’ve no need for a drastic bone marrow transplant, we do have to continue with the high-risk treatment.

We’ve driven them out, but the City of Ned now needs to fortify, secure the walls, train its eligible citizens, vaccinate the young, reinforce the windows and doors, turn their plough-sheers into swords and make the city a stronghold to hold back the enemy. And this is a task that will take over three years. Three years before we can say it is done.

The loneliness of this journey

To all those parents of children who live with chronic or life-threatening illnesses…

 We, too, now share with you in…

 -       the bone-aching sorrow for your child’s possible future, the impact of their illness on their happiness, schooling and personal development, future health, any relationships and friendships, the development of co-curricular, stimulating activities and hobbies… and, worse, the gnawing anxiety within that they may not even have a future;

-       the constant emotional and physical exhaustion of never-ending worry, by day or night, and the associated social faux-pas, misunderstandings, and complete lack of ability to cope every time something new or freshly challenging confronts you;

-       the recurring thoughts of every evening possibly being the last time you kiss your child goodnight;

-       the daily battle to stave off engulfing negativity about what lies ahead;

-       the unfounded guilt at perhaps being responsible, in some way, for your child’s illness;

-       the despair of being powerless to help or change any outcomes even though it’s your very own baby in so much trouble;

-       the constant barrage of questions from a sibling, and the poignancy of hearing their simple prayers for healing;

-       the loneliness of the journey – the constant appointments, the seclusion and isolation at home without visitors or play dates, the obsession with blood counts and germs;

-       the challenge of being the only playmates for your child day after day;

-       the inflexibility when making appointments, organising work days/hours; and by contrast, the flexibility required by others for social engagements or best-laid plans;

-       the tears that flow so freely at the sound of touching words or song lyrics;

-       the dashed life plans for the upcoming months and years;

-       the keen futility felt when unable to assist other friends, mind others’ children, attend others’ celebrations;

-       the difficulty engaging in small talk amidst social interactions;

-       the frustrations of seeing others not take advantage of and responsibility for their own and their children’s health;

-       the grief when watching other physically-able and strong children of the same age playing and tussling delightedly with each other;

-       the dread of awaiting serious test results… week after week;

-       the inability to commit to any social activities, festivities, future plans or holidays, and thus the unrewarding responsibility of not disclosing any “plans” to the children until they’re actually happening;

-       the anguish and hurt you feel at losing friends who haven’t wanted to share in the arduous journey or simply don’t make time to;

-       the heartache, and then eventual pride that emerges from seeing your child, in all their vulnerability, endure so much pain, and ultimately adapt to new routines, the discomfort of procedures, incessant medications, and strangers at their bedside.

 At the moment, I feel constantly exhausted and constantly fearful. Living in “limbo”, with ongoing uncertainty for so long has certainly taken its toll on both of us. The days stretch out before us; the hours ticking by ever slowly towards any answers we may get in the next few weeks. As much as we don’t want to hear a negative test result, we do, in fact, merely want to get this test result out of the way and dealt with, regardless. But ultimately, I know God has us in His hands, and we’re travelling a path that He has foreseen, and this gives us some solace from those fears and anxieties.

 I know not all of you believe in God’s unconditional love for each of us, but, for Seth and me, the hope and peace that our faith affords us carries and upholds us through these bleak and turbulent times. And, during perhaps the most grueling time in my life thus far, the words of the song “In Christ Alone”, sung on the day Seth and I began our life together, are so poignant, and aptly articulate why we feel this peace about Ned’s life:

“In Christ alone my hope is found,

He is my light, my strength, my song;

This Cornerstone, this solid Ground,

Firm through the fiercest drought and storm.

What heights of love, what depths of peace,

When fears are stilled, when strivings cease!

My comforter, my All in All,

Here in the love of Christ I stand.

No guilt in life, no fear in death,

This is the power of Christ in me;

From life’s first cry to final breath,

Jesus commands my destiny.

No power of hell, no scheme of man

Can ever pluck me from His hand;

Till He returns or calls me home,

Here in the power of Christ I’ll stand.”

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.