A Frantic Pause

So this is where we’re at… embarking on an even steeper uphill trek in this epic cancer battle but this time, even further from home, with no one there yet known to us. We’re ever so grateful and deeply thankful that we have the opportunity to keep battling for Ned’s life, but sad that it’s come to this – uprooting the kids yet again, and putting Ned through more intensive treatment.

These 3 weeks back home in Tasmania were supposed to be a pause in the madness, and whilst the long-awaited reunions with dear people were sweet, and the return to our home amongst bush and wildlife was so soul warming, the weeks have unfortunately been awash with tension-filled, tumultuous days and cataclysmic moments.

After ending our Melbourne time with an unexpected 6-day admission for a very sick Ned (who’d also sustained a fractured shoulder), followed by a night in ED for Gilbert, and another round of gastro courtesy of our 3yo’s stellar hygiene, we then had multiple problems changing flights, then boat trips, then changing them all again. It was an exhausting time, whilst we were also dealing with the 4 unsettled kids’ emotions, and packing up our flat of 10 months. Discovering that the critical key for Ned’s continuous infusion pump was missing upon our return directly to the Royal Hobart Hospital ended our long day of travel with yet more cortisol-fuelled hours, but coming home to a clean, well-stocked house, courtesy of dear friends, was just so lovely.

Seth and I often comment how it makes our hearts sing seeing our children spending hours exploring and playing in our bushy backyard, and relishing the space after our 2-bedroom flat on the 2nd floor for the last 10 months.

Our frenzied weeks here have been filled with box unpacking from our house move 3 weeks prior to our sudden interstate relocation last year, Melbourne bag unpacking, and the enormous task of planning for this international venture - passports, visa applications, work-related and household admin before leaving for several months, combined with the regular hospital visits. Disappointingly, Ned’s central line got infected, he became septic and crashed very rapidly during one routine clinic visit last week, and he needed a 6-day admission – starting the night before I had to fly to the US Consulate in Melbourne (with Gilbert) for a few hours in order to attend the necessary face-to-face interview for visas. Despite eventually clearing that infection, there were questions about the integrity of his central line altogether, culminating in another new infection in his central line at the start of this week. After several discussions with Melbourne and Seattle, the decision was made to remove this compromised central line in fairly urgent surgery Wednesday morning – 3 days before our flights.

We’ve so appreciated having this reprieve of a few weeks back in our true home with our dear community – despite the hurdles and stress. It’s been a salve for our bruised souls. And now, as the 2 older kids have enjoyed a couple of days at their old school, farewelled their friends and continue filling their lungs with fresh Tasmanian air, Seth and I are hastily packing suitcases for the imminent, arduous 26 hours of travel to Seattle for 3-4 months, where Ned will undergo fairly intensive treatment on a clinical trial at Seattle Children’s Hospital, starting on Tuesday 8th May. We leave from Hobart at 6am on Sunday morning, and once again, humbly ask that you spare a thought or prayer as we begin this journey and settle in the US. This is a much more advanced treatment with more risks, and though there is good long-term data thus far, it involves ongoing treatment, and there are significant, long-term ramifications for Ned’s health. If we’re honest, we are both so fearful for what the future holds, but we’ve learned again and again that no matter how deep we fall, God will carry us.

“So do not fear, for I am with you; do not be dismayed, for I am your God.   I will strengthen you and help you; I will uphold you…” Isaiah 41:10

Easter Miracle, with a few bumps...

Finally, a glow has been cast over our sobering past 10 months in Melbourne; and though we’re still on this road, with its harsh, rugged terrain, for a grim reason, the bumps have smoothed out a little, thanks to all of YOU...

What a memorable Easter weekend - one replete with incredulity and gratitude, as Seth and I came to realise just how much our various communities love and support us and our dear boy; no coincidence that it occurred at Easter, I’m sure. Your generous financial donations, kind words and prayers, particularly over the last week, have now enabled us to secure Ned's CAR T treatment in Seattle, and we'd like to humbly acknowledge each of YOU and the part you have played in him having another chance at beating cancer. We are beholden to each of you for whatever you’ve done - for any prayer you said, dollar you contributed, letter you wrote, social media post you shared... 

We agreed to be a part of the RCH’s Good Friday Appeal last year, giving consent to a journalist and photographer following us for several months. Now, as we’ve just experienced the week that was - starting off with a poor bone marrow result (telling us Ned needed to get to Seattle as soon as possible, at exorbitant cost); and then ending with RCH’s Good Friday Appeal consequent media exposure, we see God’s hand in all of it - though we have at times berated His seeming absence. It is the combination of your selfless giving and the generous financial gift from an overseas donor, now confirmed, that will get Ned to Seattle for his treatment. There have been some misunderstandings along the way, and in the vein of maintaining full transparency, I do just want to clarify that the media exposure we’ve had has neither been sought out nor anticipated, and the large overseas donation is for medical costs only - the funds we raised here will certainly also be needed. Anything superfluous to our requirements will not be used for our own personal gain, especially given the dire lack of funding for cancer research, which is so close to our hearts. Our dear friends, Stelle and Glenn Carmichael, who set up the crowdfunding campaign and have stood by us every step of the way, will continue to help guide us and hold us accountable to this. 

Now, as we pack up the 10 months of our Melbourne hospital life, and return the various borrowed items we've accrued, Ned has restarted some chemotherapy and the immunotherapy continuous infusion (in a backpack) to steady his disease progress until Seattle. We've had to begin the chorus of sad goodbyes to dear family, friends, and Lucy's school here in Melbourne; particularly difficult since these have been our network through such a dark, harrowing period. And between now and Seattle, we were permitted a few weeks in our Tasmanian home to "recharge", especially now the immediate stress of such an epic financial burden has been lifted... This was to begin on Sunday this week, however, in true Isham family style, I write this now from a hospital room, after a sleepless night, thanks to Ned’s freshly fractured shoulder (from an incident yesterday morning), a new infection, and a significant reaction to the immunotherapy drug overnight requiring hospital admission, forcing us to now postpone the booked returns till next week (hopefully). 

For now, though, THANK YOU. So very much. Despite the grim reason this funding is needed, what an extraordinary demonstration of generosity and love, and so aptly timed for a weekend when we were celebrating the greatest gift of all, from the most sacrificial act of all.  

When the transplant fails...

As I write this, it horrifies me that Ned's disease is rapidly proliferating, though he still looks so well. It has been for a while now, and this was confirmed by his bone marrow result delivered with tears on Tuesday evening. We partially expected it, knowing already that his bone marrow transplant from Eleanor had failed, but having any small amount of hopefulness entirely extinguished is oh so bleak and heartbreaking. 

Thus now, after much careful thought and prayer, Seth and I can confirm the much-unwanted direction of our next steps in Ned's treatment: we have to relocate to the Seattle Children's Hospital in the United States promptly (early May) for Ned to be treated on their CAR T-cell clinical trial over the course of 3 months. These CAR T trials use various methods to remove a patient's T cells, genetically engineer them so they are programmed to attack leukaemia-affected B cells, and re-infuse them into the patient. This is now the best remaining option for a patient like Ned, whose specific cancer seems to be resistant to chemotherapy, because at this stage, the risks of a 2nd bone marrow transplant (this time from an unrelated donor) would outweigh the potential benefits. This particular Seattle trial has been running for several years, putting 80% of patients like Ned into remission, evidenced by their data. This treatment wouldn't necessarily preclude a 2nd bone marrow transplant in future, however given Ned's current disease progression, his treatment history, genetic makeup and type of leukaemia, this is what our RCH medical team is strongly recommending we pursue given there's no viable similar trial here in Australia that is currently entirely open and suitable for Ned (although there are several pending). 

It does unfortunately come at enormous, prohibitive cost, and for this, we must humbly ask for some support along the way because we are ever so grateful for how much our village have uplifted us and carried us to this point. We know we are Ned's parents, and he is our responsibility, and we will continue to do our utmost to save Ned's life and raise all our children with love. But though we are exploring every possible avenue for us to finance the upfront cost of Ned's treatment as much as possible, we've sadly found ourselves in the desolate position of falling short and needing to plead for help because we just simply cannot do this alone.

www.gofundme.com/get-Ned-to-Seattle

We’ve now very kindly had an offer from Rare Cancers Australia to host a tax-deductible crowdfunding site (but if amount ever exceeds our needs on this site, we won’t be able to reimburse any; rather, we will donate it to cancer research at the Royal Children’s Hospital, Melbourne).

http://treat.rarecancers.org.au/campaign/2059/helping-ned-isham

Fragile

It’s the familiarity with which she purposefully strides, mundanely pushing the packed pram through the hospital.

It’s the first-name greetings they both dispense habitually to passing hospital staff in the corridors and baristas in onsite cafes.

It’s the small girl leading the way through the building’s twists and turns with a boldness that exceeds her years.  

It’s the limp with which the slightly taller boy hobbles in a futile attempt to keep up with his little sister, to his despair.

It’s the efficiency with which the adults seem to manage several unruly children whilst negotiating queues and healthcare staff carrying out their jobs.

It’s the short temper and quick irritation they occasionally display when even the little things go wrong.

It’s the deeper skin grooves, the wisps of grey hairs, the sunken, encircled eyes, and the haggard shoulder slump that they both carry wearily.

It’s the over-enthusiastic jokes and games he’s playing with his laughing kids, to cover his fragility.

It’s the unmitigated anxious overreaction she responds with to any casual conversation, joke or perceived threat.

It’s the moments of hesitation in response to usual catch-up questions, followed by answers tinged with defeat and pessimism.

It’s the casualness with which she discusses the surgery or procedure scheduled the next day.

It’s the ringing phone that remains unanswered and the delayed replies because they both struggle to respond to the dreaded questions, or converse with an unbroken voice.

It’s the hardened smiles and slightly pressured speech when talking to other parents, while awaiting the doctor’s call to convey the dreaded test result or distractedly looking at the phone in anticipation. 

It’s glimpsing her, stooped over with face in hands in a hidden corner.

It’s the deadpan, emotionless tone of her voice when discussing the few remaining options and their consequences for her little boy.

It’s now been nearly 4 years of battling this beast, and it’s viciously unrelenting – the constant difficult decisions, battles, broken promises, whilst away from home – both physically and emotionally burdensome. And now we still don’t see an end. The transplant was meant to be it – the end; the cure, but that end-of-tunnel light is now only a vague glow. Every stage has been and is still a rocky, contentious, grueling phase filled with uncertainties and no guarantees. We are sad for all of our children, particularly Ned, and so very shattered – waking each morning, after yet another broken, unsettled night, to get on with the essential motions of getting 4 children ready for the day ahead. It’s a cruel irony that the child who you’ve spent the most one-on-one time with, caring for during their most vulnerable moments; the one in whom you’ve seen the most deep resilience and raw emotion, is the one whose existence you have to constantly grapple with the possible loss of.

We still don’t know what’s ahead, and neither do the doctors. But this we do know: though we are breaking inside at the prospect of our final tentative option possibly falling through, though the grief we may experience is too hard to even contemplate, we know that wherever Ned is or goes, he will be held in loving arms here on earth or with our Father in heaven. 

Unwelcome Choices

Waiting. In the oncology world, it is never just empty, stagnant time like it is in so many other facets of life. But rather, a mind-numbingly vacuous, black hole filled with apprehension, dread and tension, muffling every other noise of life. Though we're overly familiar with both, the emotional toll of this ever-present oncology reality far exceeds the physical demands… waiting for the next appointment, waiting for the next test, waiting for the next results which have the potential to devastate your child's and your family’s life.

This dreaded unwanted result is where Seth and I found ourselves last week – the bone marrow test positive for residual leukaemia, that we had so been hoping and praying against. It has taken even Ned’s treating team by surprise because it has happened after a gold-standard sibling transplant, with some Graft-vs-Host Disease (GvHD has an anti-leukaemic effect). The ensuing week has been a tortuous road of complex decisions that no parent should ever have to make; all options fraught with potential dangers and an immunological complexity that I can’t do justice to or accurately convey; all of it shrouding several family celebrations - birthdays, anniversary and the start of Lucy's 4th grade school year. 

This time last week, we were hurriedly seeking ethics approval and agonisingly consenting for Eleanor to go be readmitted, put back under GA again, and have a tube inserted into her groin to collect more lymphocytes, over the course of many hours, to infuse into Ned… with only a 10-30% success rate. Knowing Ned’s life was hanging in the balance, questions were asked of us requiring emotionless objectivity regarding our children, just as a family gastro outbreak took its physical toll, and we spent hours in weary, sleepless anguish, despairing that God has allowed this.

Today, we’ve just emerged from a teleconference with leading oncologists and cancer researchers in Seattle regarding possible treatment there as the next step, at prohibitive expense, as well as their opinions on alternative developing treatments depending on Ned’s disease course from here (based on his T cell markers, his genetic makeup, his level of immunosuppression and GvHD, and his results thus far). It seems rather dispassionate and cold-blooded to be constantly weighing up various incompatible treatments (one precluding eligibility for the other, etc), balancing risks, and even waiting till disease worsens enough to qualify for further treatments; but we are so thankful to God that there even is another possible option. And after today, Ned’s specialist, Seth and I all feel slightly more reassured about our plotted treatment plan and time course, with Ned’s best interests in mind, based on these experts’ advice. Though one option would be at exorbitant cost, and there are still many uncertainties (which prevents me from giving further details), this I do know for certain: we are currently witnessing an enormous upsurge in cancer treatment technologies developing internationally, not just in Seattle… meaning that in a matter of months, there will be clinical trials emerging and treatments available for select paediatric cancers that would most certainly have been palliated only a couple of years ago.

Ned will have a repeat bone marrow test on the 27th Feb, the results of which we will get the following week. This will be the determining factor on how we proceed, whether locally or overseas. If we have a similar result to what we just had last week, we’re hoping that returning to chemotherapy in a holding pattern may buy us some time before the ideal treatment is approved in Australia, God-willing. And this gives us a slim hope that we can continue to imagine our family continuing on with all 4 precious children. 

So after we crumble for a few days, whilst trying to maintain a sense of stability for the other children, we pick ourselves back up and recalibrate to the new "normal", with yet another adjusted frame of reference and altered perspective. And the interminable waiting, while in isolation, begins yet again... 

Groundhog Day

Ah life. A relentless, wearying, cortisol-fuelled rollercoaster ride recently... and most of 2017 really, starting with my exams at the beginning of the year. Ned's discharge from Transplant Unit just before New Year's Eve perhaps instilled some hope that 2018 might possibly be a better year for our family... 

Ned had his transplant on the 27th November, and it went smoothly, by the grace of God – although Eleanor (present at the door during infusion, thanks to donor privilege) fainted while watching! Poor 2yo poppet had had croup 2.5 weeks earlier, then gastro 4 days prior (being admitted to hospital till the procedure), then fasted till theatre just after midday – with not one complaint. She was fairly fatigued and in pain for the following couple of weeks, but has now made a full recovery, being well and truly back to her cheeky, mischievous, vivacious self. Although now, she refers to every man in theatre scrubs as “my theatre doctor”, and calls the RCH “MY host-el where Ned goes” (as opposed to being previously named “Ned’s host-el”).

The weeks following transplant, including Christmas, stretched out in a bleak Groundhog pattern, in a sealed transplant ward bubble, with growing anticipation of engraftment with each passing day. The days were long, and the weeks were short. Regular bloods told the story of what his bone marrow was doing, while his small body was wracked with pain (from mucositis), nausea, fatigue, incontinence and various other awful symptoms. Consequently, he soon ceased to tolerate any oral foods, and vomited up his nasogastric tube, thus condemning him to TPN (IV nutrition, so to speak). Seth and I split the weeks – Seth home with the girls half the week, while I was in with the boys, and vice versa. It was an emotionally harrowing time as we dealt with not only Ned’s immense suffering in that small room, his sadness at losing his hair yet again and missing his sisters, but we also had to stay up to speed with the medical issues, maintain necessary prompt care & constant distractions for Ned, round-the-clock nighttime care, keep the irritable baby fed and comforted, and coordinate & care for the girls on the outside of the transplant unit, all whilst being separated ourselves. It was a life that I wouldn’t wish on anyone, but it was a life sustained by God, in the capable, knowledgeable hands of a very experienced medical team, in a rigidly-controlled unit.

Official engraftment occurred by Day +26 – a milestone based on stable bloods, showing that his new marrow from Eleanor was finally producing its own cells. It was an exciting day, but soon followed by the requisite nasogastric tube reinsertion (a very distressing day owing to initial misplacement), and the commencement of the inevitable mealtime cajoling and eating conflicts.

Quite apart from our own family’s fractured state and emotional havoc, many families around us were suffering immensely as well. Though it’s an oncology ward, the battle mentality can make you forget the horrid opponent; the inevitable outcome that confronts some of the kids and families who you and your sick children befriend. Just as a non-cancer parent thinks “thank God that’s not us”, a non-palliative cancer parent thinks the same about reaching the end of the line – the point where there are no more cards up the treating team’s sleeves. One of Ned’s closest friends from oncology, with whom he did ward kinder classes, lost her battle shortly before Christmas, and we’ve been so grieved for her parents who have lost their precious little soul. Such a cruel, despicable, insidious disease, cancer...

Ned was discharged after 6 weeks in hospital, on many strict medication doses, full continuous nasogastric feeds, into home isolation that has to be temperature-regulated, where we’ve had to bargain with Ned (suffering from significant nausea and lacking any appetite) to eat, but only foods on a ‘clean’ transplant diet. Going back to a 2-bedroom flat with 4 children and these requirements for one of them (including the continuously-alarming nasogastric pump, which invades even the deepest of sleep), has introduced a whole new level of heightened tension and stress in our household, especially because it’s been lovely weather and Summer holidays – a time when the kids want to go out and have adventures together (but Ned has to stay away from people) and play in sunshine (Ned can’t get hot, and can’t be in direct sunlight). Seth and I have had to constantly act as super-tolerant, peace-bringing, creative, nursing, multi-tasking, consoling mediators, on the back of very little sleep. We are so thankful for God’s sustenance - the strength we can muster even when it all feels so vastly beyond our capabilities. Our patience is often tested, so Seth and I have made efforts to improve our mental health and 'sanity' by having unrelated goals we can each focus on - Seth enjoys art projects, and I enjoy all-consuming exercise. Seth's working on a glass sculpture for a small exhibition later in the year back in Tasmania, and I just (rather spontaneously) ran in a half marathon event on the weekend, which gave me that thrilling 'runner's high' for the better part of the day. 

Though recently, the investigations for a worsening limp, fatigue and low-grade fevers came back normal, a week prior, we had a big blow - Ned’s 30-day bone marrow results came back a tiny bit positive, when they should have been negative. I must say, I’m becoming sadly well acquainted with the heartsink, sucker-punch feeling from seeing my phone ring with the name of a doctor on the screen, and the words “Hi Emily, I’m sorry to say…” And my ensuing feelings of shock, indignation and fury at God. This is not definitively a relapse, and there are some treatments that have been tweaked to try and attain a negative result, God-willing, at the 60-day bone marrow test (on 1st Feb), but every time I even so much as think of that day in the weeks ahead, anxiety and dread overwhelms me. Because there really aren’t many more cards up our sleeves… 

A nativity scene planned and executed by the kids before Transplant

Reunited after discharge! 

Day Zero

So today is The Day. “Bonemarrowtransplant Day”, as Ned calls it. And it’s been a less-than-ideal, challenging lead-up, as often seems to befall our family. Ned was admitted to isolation on the BMT (bone marrow transplant) ward last Sunday = Day -8. In isolation, he’s only allowed to have Seth, me, Gilbert (breastfed and <6 months old) and 2 other adults visiting; not his sisters. He then had 5 days of pre-transplant conditioning to deplete his own diseased bone marrow and prepare his body to receive donated healthy marrow. On Thursday (Day -4), his 2yo donor sister, Eleanor, started vomiting and developed further gastro symptoms by Friday (Day -3), enough to warrant admission - on a different ward in the same hospital!  The logistical challenge of which parent stays with which child, particularly since it involves a breastfed baby, strict infection control and isolation, has been ongoing, but fortunately, Lucy (who then also developed gastro) was able to stay with my parents. 

Consequently, it’s been a much more fatiguing, emotional week than we anticipated, where Seth and I have been like apprehensive ships in the night, each not seeing 1-2 of our kids for a while, not to mention fresh air and sunlight. We’ve had contact precautions up to our teeth and have had to optimise Eleanor’s health quickly because Ned’s so dependent upon her marrow. We’ve been fortunate to have wonderful nurses and the same transplant team caring for both kids - all prioritising their well-being for this very day. 

Ned’s doing surprisingly well, especially given his heavy chemo on Friday that required frequent (6-hourly and through the night) showers, bedding and clothing changes. Though isolated, nauseated, and no longer wanting any of his packaged-food-only diet, he’s enjoying his new disinfected / sealed Lego, board games and toys, and tolerating nasogastric feeds. He knows his beloved little sister is giving him a precious gift and he shows her such tenderness and care when they FaceTime. 

​“Me-too” Eleanor has just been so so keen to do what Ned’s doing! I guess it’s to be expected given she was born into this cancer world and has grown up around it. She’s always wanted to “go to the doctor”, “have a blood test”, “go to Ned’s theatre”, “eat MY hos-tal food”, “sleep in MY hos-tal bed”, and has perfectly obliged us in everything. She’s especially enjoying “There’s a Hippopotamus on My Hospital Roof Eating Cake”, and thinks there’s a hippo sitting up on the roof above her (great book for hospitalised kids by the way!). She’s now mostly back to her cheeky, grinning, chatty, cuddly self, and stable enough to have the procedure done today. What a beautiful gift she’s giving! 

Lucy’s being a stalwart, resilient older sister, despite missing us all dreadfully, especially hugging Ned.

It’s been a really tough couple of weeks for her, not to mention the months before when she’s been carrying a lot of this and other responsibilities on her young shoulders. She understands what’s happening, desperately wishes she could give such a precious gift to her brother, but doesn’t complain about not being in that role. We’ve had to reassure her many times how crucial and valued a family member she is and always will be. 

3-month-old Gilbert is still a cranky baby, but now gracing us with occasional smiles and chuckles! Ned is just loving that Gilbert’s allowed into his isolation room. 

But today, it’s Eleanor who is going to theatre in the morning, having some of her bone marrow aspirated under GA, which will then be processed and infused into Ned, in what looks like a small bag of blood, late afternoon. It is Day 0. We have been told that from now we are to expect anything for Ned, and be prepared for organ failure, ICU admissions, symptoms of GVHD (graft vs host disease), etc, and it will be a minimum of 6-8 week stay in isolation for Ned, if uncomplicated. Fortunately he’s having the gold-standard sibling transplant - and yes, his blood type will change to hers! Restrictions, reviews and complications will continue for years. 

Today is Day 0, and time is ticking. This is a momentous day for our whole family, especially so for our darling Eleanor and our dear Ned. 

“He gives strength to the weary... those who hope in the Lord will renew their strength.”  Isaiah 40:29-31

Joy and Trepidation

Gilbert Peter

”bright pledge and rock” 

3.54kg; 4.09pm, 23rd August 2017

What a joy it’s been welcoming a new little one to this world of ours... but also how heartbreakingly difficult for me particularly. Into a world of tension, chaos, anxious siblings, white walls, sadness, resentment, anger, and exhaustion came baby Gilbert on that Wednesday - into the skilled hands of 2 midwives (one of whom is a treasured friend who flew up from Hobart), while my parents and my other dear friend, Jess, helped with the day's coordination. There was excitement and relief at his safe arrival, but as the overjoyed sisters and brother cuddled him enthusiastically, the happy tears had a bitter after-taste. I’ve never before experienced such contrasting extreme emotions concurrently: 2 children of ours - one tiny, pink, screaming bundle in the arms of one fatigued, luminously-pale, hairless, sunken-eyed brother. To this day, try as I might, my heart is perplexed by this juxtaposition of thrilling new life against a constant background of sadness... and my smile often masks uncertainties about how to act or what to say. I think the fact that we feel like we’re simply treading water and “surviving” on an adrenaline rush has prevented us from deeper considerations. 

Since Gilbert’s birth however, despite being quite the discontented, unsettled child, we have had moments of pleasantness and delight - sibling cuddles and pride from showing "their baby" off, the peace afforded by a warm bath, the bright newborn eyes, wise beyond his years, cynically drinking in all the shadows and bright colours around us... Although this is my fourth precious baby, I'm still in awe of this miracle of life and the evidence of our Creator's hand in its formation. 

To be perfectly honest, it’s been a really tough few months. For the first 7 weeks of Gilbert’s life, Ned (and thus Seth) have been in hospital, which no-one liked. Ned was SO sad he couldn’t be at home to welcome his brother and hold him every morning, Seth was sad he didn’t get those evening newborn cuddles, and I was sad (and frustrated) that I didn’t have Seth to help me with any newborn nights or sick girls, that my family was so fractured at what should’ve been a joyous time. I have also felt such guilt because Gilbert has spent a great deal of time screaming by virtue of me parenting solo and being physically incapable of tending to his (frequent) distress instantly (I’ve since found out that his diagnosed laryngomalacia and reflux are to blame for his feeding issues, difficulty sleeping and slower weight gain than my previous babies).

On this background of fatigue and emotional exhaustion are moments where the reality of childhood cancer has struck with such force. When you’re on an oncology ward constantly, you bond with other families all fighting the same battle... to win. The unspoken elephant in the room is what the grim reality of a lost battle means, and heartbreaking news from several friends has blindsided us and forced us to process our raw grief at so many other children’s suffering, particularly these friends. It’s a different world this, an “alternate universe”... one where you can’t ever feel secure about any of your kids’ health; one where bad news is often expected; one where your kids learn to pray for people “not to die”; one where making serious decisions for your child’s future, whilst juggling multiple children, emotional fatigue and sleep deprivation is considered the daily norm; one where long complex medication names are the standard language used; one where the anxiety of any situation’s risks and children’s safety overrides anything else; and one where, rather than discussing how to optimise your child’s life, health and long-term happiness, discussions simply revolve around your child’s expected morbidities and long-term survival rate; and one where your constant mental state is tense and on "high alert". 

Despite the trials though, these last few months have also finally brought us some unexpected better times. Ned was started on a clinical trial where he happened to be randomised to the trial immunotherapy drug (as opposed to the standard chemo regime that was the other trial arm). It consisted of a 28-day continuous infusion from an infusion pump in a back pack he carried constantly. We were so relieved that Ned was randomised to the immunotherapy arm (an answer to prayer) because, although long-term studies are lacking (hence the trial), it’s meant that, once he was stabilised, he could be discharged from hospital for a few weeks, carrying the infusion pump in his backpack. The alternative was weeks of more heavy chemo hooked to the IV pole in hospital till transplant. Despite most days spent in hospital still (tests, procedures, checkups, reviews, etc), it has been so lovely having him ‘home’ again. He’s really enjoyed the freedom of no IV pole, being able to play Lego with the girls again, walking with us to & from Lucy’s school, eating meals together, etc. Furthermore, given we haven't yet reached transplant time, but the clinical trial has now ended, he was approved for further compassionate access to the drug because he has responded so well to the 28-day infusion (so he can stay out of hospital rather than going back on nasty chemo before transplant). For this we are so thankful. 

The transplant process has been set to start on the 19th November. This is the date Ned is likely to get the bed; then will start 7-10 days of 'conditioning' to prepare his body for receiving Eleanor's bone marrow - which is going to take quite a toll on his little body. The big Transplant itself is probably going to take place on the 27th November: Eleanor will go into theatre in the morning to have bone marrow aspirated, and then she'll be admitted to a ward for only a couple of nights of analgesia and other post-op management. The bone marrow will be processed in the lab for a few hours, then anti-climactically, the small bag (which looks like a blood transfusion) will be infused into Ned. From there we start the harrowing recovery day count; Transplant Day being Day 0. The first 3-4 weeks will have the highest risks of complications. 

Thank you for getting this far - we are humbled by the interest of those following along and praying for us or simply pausing to think of us and convey that acknowledgement in some way. This was a tough blog post to write, which is why I kept putting it off, but right now, in this moment, though we are still upset about a lot of things, we are grateful Ned's our son, and we feel privileged to hold his hand and walk with him in his vulnerabilities, tears and fear, trusting God is guiding us - especially through the bleaker months ahead. 

Credit to our dear friend, Lisa Kuilenburg, for most of the photos (the best ones!) in this post.