Swimming Upstream

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Through icy waters at first, then turbulent, glacial waters infested with sharks, then sticky mud, then impenetrable clay... this upstream swim is becoming more strenuous as it progresses merely by virtue of time passing. The medical side of me often stands aghast in sheer disbelief that this seemingly-fabricated drama continues to defy reason and evidence-based expectations; but being Ned's parents and at the coalface, we've almost come to expect that each unfolding development will reveal unanticipated, maddening twists and turns in our path... and yet, by faith, we must kick our feet & lift another arm to stroke and propel ourselves through these murky, tumultuous waters - simply because we have no alternative. 

This past abysmal week has involved discussions with the palliative care team; unwillingly gearing ourselves up for poor bone marrow results and the consequent sombre meetings with Ned's oncology team, likely followed by returning to our home in Tasmania for Ned's final days. 

WHAT a shock, then, when we received an early phone call to relay astounding preliminary bone marrow results showing ZERO disease remaining (still awaiting more detailed flow results from Sydney) after 2 weeks of this CD22-targeted immunotherapy! Down from 15%! Another 180-degree turnaround - once again, confounding the treating medical teams and defying the odds. We praise God for this astonishing outcome that has exceeded all expectations, and though we cannot fathom why God would allow any prolonged senseless suffering (in Ned, as well as throughout the world), and this particularly torturous maze to navigate, we thank Him for His mercy in this moment, showing us grace at the 'final hour'. God owes us nought; He is not our debtor, and each blessed day more with Ned is a treasured gift. 

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Harking thus back to my initial analogy, these results are somewhat akin to finally reaching a small island with a finite water supply and mediocre food, after an epic swim through treacherous waters. Yes, we are on land, a modest refuge and miraculous step forward when the alternative was so dire, but this island is merely a transient stepping stone on the looming path towards a daunting marathon ahead; for a 2nd bone marrow transplant (this time, an unrelated donor) is often more harrowing and complicated, with greater risks and long-term impairments.

From as soon as these preliminary results were known, over the last few days, we and our team have had to immediately begin the numerous pre-transplant tests and preparations, as well as activating the matched cord blood that has been found on the International Registry. Ned will be going into transplant within the next fortnight to start conditioning, thus beginning the time of family separation, isolation, strict infection control, nasogastric feeding and transplant diet once again. It is a heightened time of stress and much trepidation, with many imminent appointments and procedures, including a general anaesthetic for Gilbert to have his right eye's tear duct probed (unblocked) prior to Ned's immunosuppression. Though we acknowledge possible 'compassion fatigue' and our story maybe becoming tiresome, we thank you sincerely for all manner of encouragement and support to date, and we humbly beg for your continued thoughts and prayers - for wisdom in how to explain all of this to our children, for family cohesion, for success of the transplant, for peace in our troubled hearts, saddened by what Ned has to endure once again and the normal boyhood he misses out on. 

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"Lifting up my heavy heart, held in grace-scarred hands; I am carried in the arms of grace and love divine"   

Familiar Anguish

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“Prepare for the worst, hope for the best.”

What words to hear, process, digest and incorporate as foundational building blocks for our new transient life with 4 naïve dependents. And exactly how to follow this instruction when it's your child's life in the balance? We’ve been here before, but in a different country... It’s a dark abyss that we’ve been intermittently toeing the edge of, but now that very edge is starting to perilously crumble, and every single infinitesimal part of my soul is clinging on, protesting vehemently, willing the earth to stop shaking so we can climb back onto solid ground. The solid ground where we have 4 healthy children, and we’re living the reality of normal, busy family life, school and work. Oh how we desperately long to wake out of this nightmare. And 'nightmare' is a fair description… for no imagined fictitious chronicle could possibly conjure such extremes of emotions in rapid succession. And today, the 25th July, marks 4 years of this cancer battle and its harrowing impact. 

The stress of packing up our Seattle house, farewelling our new dear friends, traveling 32 hours (with a vomiting, croupy baby), and landing squarely back in the 'temporary' medical-home city, to new accommodation (and immense generosity, might I gratefully add), and starting with a hospital admission was arduous and exhausting… although it would have been a lot worse had it not been for our seat upgrade on the 16-hour LAX-Melbourne flight and my parents’ packing assistance and accompaniment in travel.

Thankfully, Ned's immediate testing on arrival revealed that his CNS had not relapsed (ie. his spinal fluid was still clear of leukaemia); on a more sobering note, however, it also uncovered another massive disease proliferation in his bone marrow (from 0.12% to 15%) - even despite evidence of circulating active CAR T cells targeting his prolific CD22-marked disease. The reason for their total ineffectiveness and lack of longevity in Ned’s body is a medical mystery defying even the world's CAR T experts. It also means that the likelihood of success from the CD22-targeted immunotherapy that was planned is very low – given that not only have the CAR Ts not killed it, but more importantly, that the disease has proliferated so aggressively in a short time.

So yet again, this ominous chasm stretches before us, and in no way can we mentally prepare ourselves for what’s ahead… whatever that may be. No loveliness can erase our background despondency. Ned seems well in himself still, and went ahead with starting the immunotherapy course (weekly infusions) last Friday, and will have another dose at the end of this week; followed by another bone marrow test next Wednesday. This will be a crucial determinant of where we focus our management from then on, whether with a curative intent (towards bone marrow transplant), or palliative.

Such uncertainty and unknown ahead; the feelings of impotence and grief are so palpable... but yet though the word 'frailty' was on the tip of my tongue, it is not so. We cling to our ever-present, steadfast Lord, who, knowing this same pain, still goes before us and holds us through whatever brokenness, sadness and despair we feel, infusing us daily with the peace and strength we need to parent each of our four beautiful children through this hell. 

  “It is God who arms me with strength and keeps my way secure...”

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Race Against Time

The rollercoaster ride continues...

Ned’s bone marrow results this week weren’t as we were hoping. His marrow disease multiplied by a log-fold in 10 days - to 0.12%. Nasty, insidious creature that leukaemia is. This is despite the remaining cells expressing the right protein! Yet again, Ned has stumped the team. 

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Fortunately his CNS is still negative (ie. his spinal fluid is clear of leukaemia cells) - a significant detail because resultantly, there’s one more immunotherapy agent he can possibly have in Melbourne to achieve full marrow remission (so he can have a hopefully-curative 2nd transplant). If his CNS relapses, however, this agent will not work, and we thus shall be doing another 180 in what we are envisaging ahead.

So it’s a race against time between his marrow disease proliferating so much that it spreads back to his CNS, and arriving back in Melbourne on the 18th (after leaving Seattle on the 16th) to start this immunotherapy quickly before that happens... with quite a few more details and complications in between, which I'm having an ongoing discussion about with Ned's various specialists. 

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I know it must seem like we keep ‘pulling rabbits out of the hat’.  Sometimes it seems that way for us as well. To grasp at yet more proffered hope, then have that withdrawn repetitively is just exhausting and emotionally all-consuming. Once again, for the umpteenth time, we find ourselves in the distasteful position of an uncertain future - even just one week ahead - and thus what we need to prepare ourselves or our children for. To cling to the possibility of another “last” treatment working, or to just let go; with nothing but Ned's best interests at the forefront of our priorities. Ned’s results seem to just keep confounding us and our team, and swinging us around in all extreme directions. From being extremely sick (with seemingly very little time left), to a miraculous response, to now another downhill - when this time, the expectation was that the positive response would continue. His body is a mystery - as, I suppose, it should be. Just God reminding us that we don’t know it all, I guess. And I write this after another night of a hospital admission for cause unknown.

We count it as a blessing, however, that we've been able to enjoy some sunshine and hospital-free days in Seattle with my parents since they arrived... 

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But for now, there is no answer and SO many clouds. Like I've told my weary self time and time again, only God knows. This, however, is certain: the next week is critical - desperately hoping and praying for no CNS relapse before we arrive back in Melbourne next week - directly to Royal Children's Hospital, after 26+ hours of travel.  

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Cautious Hope

They worked! Those blessed T cells bloody worked!! Mostly...

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So it’s with some cautious optimism that we are letting you, our cherished support network know that Ned’s bone marrow disease has dropped from 58% to 0.01% in the 12 days since his T cell infusion - astonishing even the doctors. That 0.01% is not ideal, but it is much, MUCH better than anyone’s wildest dreams for the T cell outcome. Best of all, the much more hardy, tenacious CNS disease (the leukaemia in his spinal fluid) – the part of the disease that would strangle any likelihood of remission and 2nd transplant – has completely cleared! That the T cells have somehow been able to target and kill the majority of his ‘foreign’-looking leukaemia is unprecedented, and we are SO grateful to God for this glimmer of hope at the eleventh hour… though it be still tentative.

Last week, Ned was admitted to hospital with his body’s post-T cell inflammatory response, and the unknowns were horrendously overwhelming. And during the sleepless haze of that awful week, whilst he was in significant pain from the T cells attacking his leukaemia, I was all too aware that it could be a steep descent to a tremendously sad, heartbreaking end. We were thankful to have Seth’s Dad visiting, and now, my parents have flown over (after leaving Congo) to help. Ned was fortunately discharged on Saturday, Seth’s birthday, but it’s been an anxious wait to know if we’d be returning immediately to Tasmania for Ned’s final numbered days, or if we could timidly allow ourselves some hope. 

I can’t begin to explain how the undulating waves of hope, with more crashes than crests, have worn us thin and sunk us into a pessimistic quagmire, which is why our caution precedes us. But as it stands right now, Ned’s disease is radically diminished thanks to those precious T cells, and we’re hopeful that next week’s bone marrow results will continue in this positive trend and show full remission. If this eventuates, we’ll be returning to Melbourne in mid-July and start preparing him for another bone marrow transplant. NEVER would we have thought that this would become the better option. We sit in a puzzled state of apprehension, yet constantly anchored by God’s steadfastness and its transcending peace – torn between grief of putting Ned through a 2nd transplant, and now, the joy that we don’t yet have to face the dire alternative. And we humbly thank God for carrying us through such a dark time, and continuing to walk beside us as we face what lies ahead. 

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  “Peace I leave with you; my peace I give you... Do not let your hearts be troubled and do not be afraid.” 

God knows

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It is with great pain and sorrow that I write this update. Over the last 6 days, Seth and I have been confronted with the turmoil of having to make an excruciatingly distressing decision. Not only did symptoms and a comprehensive scan early last week divulge that Ned’s cancer has progressed exponentially (now with increasing bone marrow disease, non-responsive central nervous system disease, and solid organ infiltrates, causing some bony erosion); but shockingly, his bone marrow test revealed that his leukaemic cells have mutated and are no longer expressing the right target for the incoming new T cells (with many finer details in between). A catastrophic blow. Our last option, with now only minimal chance of curing his rapidly-advancing cancer.

Knowing the requirement to stay grounded at Seattle Children’s Hospital for at least 2 weeks post-infusion because of its significant side effects, accepting the T cells brings the great risk that Ned will never return to his beloved Tasmanian home and friends, who he so desperately misses. On the other hand, declining these T cells (along with their tiny chance of bringing remission) means we leave Seattle now so that we can get Ned home for his remaining few weeks-months. We will struggle to forgive ourselves for the unwanted outcome either way - wanting the best for Ned, but all too aware that this 6yo can’t comprehend the severity of his disease, nor the implications of either decision. Choosing “the lesser of 2 evils” has never been such an apt description, and at such a pivotal moment desperately needing mental clarity, we have never been so exhausted and deplete.

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6 days of crying out to God for mercy and guidance.

6 days of tearful, resigned deliberations with the members of his medical team.

6 days of watching Ned compliantly accepting his abnormal routine of endless medications, daily hospital appointments, procedures, constant nausea and pain; the atrocious physical toll; weighing up his quality of life at the moment.

6 days of sleepless moaning shrouded by the private hood of nighttime.

6 days of wretched helplessness, watching our children playfully interact as though nothing is wrong; watching Ned striking the fine balance between normal energetic, imaginative, playful, and terminally ill.

6 days of trying to distract our minds from the colossal ramifications of either decision we make.  

6 days of wrestling with the sudden stark, blunt reality of mortality, and the vast hole it will leave in our family. 

6 days of grappling with finding the right words to gently explain this nightmare to our children.

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6 days of trying to soak in every moment, every touch, kiss and hug, and entrench them deep into our souls’ memories.

6 days of knowing the end is nigh; the intricacies of which are only known by God.

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Short of a miracle, there is nothing more we can do for our darling Ned, and my heart aches and aches and groans and pleads for another lifeline. Just a little bit more hope.

After much anguish and turmoil, Seth and I have decided to leave everything in God’s hands; so this morning, Ned is having his T cells re-infused. We don’t have unrealistic expectations of a medical miracle, and acknowledge that there’s every chance they will do nothing, and Ned’s disease will progress so quickly in the next few weeks that he won’t make it home. But we came here for the cells, so given he’s clinically stable, we’ve decided he will get the cells, come what may.

Though there is so much unknown right now, this we do know: God is sovereign over Ned’s cancer. The battle is His, and we are helpless in this. This horrid situation doesn’t disprove His existence and love, and though we waver, doubt and rail against Him oh so often, our souls feel more stillness and peace knowing how treasured Ned is to our Father. And He knows intimately the pain of watching a child suffer. God knows.

“Though I walk through the valley of the shadow of death, I will fear no evil; for You are with me...” 

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Sleepless in Springtime Seattle

… An apt description of our first 2 weeks here…

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Seattle is a spectacular city – this time of year only serves to highlight its luscious greenery, with an abundance of blossom dappling the sunlight onto footpaths, and painting the perpetually-azure sky like a canvas. We’ve been fortunate to now be settled into a short-term rental house, furnished by a very generous community, within walking distance of Seattle Children’s Hospital. However the turmoil of moving away from home yet again has been deeply unsettling for all of us; our nights being endlessly broken by each of our children and our own wrestle with undulant fears and uncertainties. Foreign differences we once would have easily assimilated, such as cultural variations, unfamiliar healthcare system, hospital operations and measuring units, amplify any feelings of pre-existing vulnerability and despondence – especially when already emotionally and physically deplete, with 4 jet-lagged kids in tow.

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We left our Tasmanian home at 3am on the 6th May, and after traveling 26 hours, we arrived in Seattle at 11.30am on the 6th May! On the 14-hour leg to L.A., the kids’ naps didn’t overlap, one’s stomach was affected by turbulence, one shamelessly threw outrageous tantrums and played chasing games down the sleeping aisles; then a pilot fainted and fell down stairs sustaining a nasty head injury, and seemingly, there were no other doctors on board. At that flight’s end, as I handed over to the ground medical team, some disembarking passengers offered sympathetic looks to our embarrassed selves, but our mortification continued, as our darling 3yo screamed her way through the entire airport. Hey hey, Seattle, Eleanor Isham has arrived!

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Our first few days were spent attending initial appointments at Seattle Children’s Hospital (finally putting faces to the names from many email conversations), celebrating Mothers’ Day over a delicious picnic in gardens with some new friends, and exploring the local area for essentials, as we searched for longer-term accommodation. Amazingly, after we signed the lease on a vacant house, Juli, the friend of one of our Tasmanian church members broadcast our need for household items via social media, and by the end of the week, our short-term rental was generously furnished – giving a local TV channel a triumphant news story.

The sheer delight on the kids’ faces upon discovering their beautifully-made beds and gifted toys gave us some blessed moments of joy, after so many days of running household tensions and anxious over-reactions, and Juli and her husband, Chris, have continued helping us settle in.

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Finding a home here, with a small garden, more than 2 bedrooms, and play areas for the kids, meeting some neighbours, Lucy making a friend, and the lease of family bikes to get ourselves around was all timed perfectly. Following our move into the house came a week of bad news. The evaluation tests done in the first few days revealed Ned’s bone marrow leukaemia had increased from <0.01% to 43% within only 1.5 months, and spread to his CNS (spinal fluid) for the first time, which immediately alters long-term prognosis. This shocked our Seattle, Melbourne and Hobart teams, and plans were hastily amended to include some intense chemotherapy as soon as possible after his T cells had been extracted. This ‘apheresis’ process was carried out last week, after surgery for placement of a new Hickman central line, and he’s now re-started intense chemotherapy to try and hold his disease till the T cells are ready for re-infusion. 

 

The second devastating blow, delivered a few days later, was that due to Ned’s unique T cell biology and disease load, he will require a 2nd bone marrow transplant. The CAR T treatment that he’s having here (tailored to his specific T cell markers, and so new that Ned will be the 7th in the world to be treated) is still imperative to remove his current chemotherapy-resistant cancer’s aggressive build-up; however CAR T independently will not be enough to achieve long-term remission, and will instead now act to maximise his chances of a 2nd transplant being his “cure” (as per the limited long-term data we currently have for this treatment). Ned will go into transplant (this time from an unrelated donor) upon our return to Australia – meaning we won’t get to go home to Tasmania in August. And whilst we knew this might be a possibility after our Seattle time (based on his in-depth cancer evaluations and response to CAR T), having to begin everything all over again in Melbourne is a monumental disappointment that we are yet to convey to the kids for fear of our own crumbling emotions.

  Momentous day: apheresis (T cell extraction)

Momentous day: apheresis (T cell extraction)

Celebrating Ned’s 6th birthday on the weekend was bittersweet. By cooking pancakes for breakfast, taking a family train trip into the city, sharing fish & chips at the waterfront, riding the ferry to Bainbridge Island for ice cream, watching fishmongers throw fish at the markets, and having a candle-lit Spiderman birthday cake, we ticked many of the boxes on Ned’s wish-list, to his delight.

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Although the bitter undertones were unavoidable for us, and though there’s plaguing guilt about each of our children being short-changed, we’re trying to remind ourselves to cherish the preciousness of each child, to simply be, thanking God for the 6 years we have had of this delightful, chatty, affectionate little lad, who just loves telling long-winded stories at the table instead of eating his dinner. 

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A Frantic Pause

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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.

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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.

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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.

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“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...

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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.  

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