Kintsugi

 

Emily has this wonderful ability to sculpt, shape, rework and finely tune beautifully articulate updates of our journey with Ned’s cancer. While deeply personal she always captures so clearly, and expresses so eloquently what I often fumble to express myself.

 

It is in another format that I have found myself naturally shaping and forming an expression of what I have been feeling and wrestling with over the last few months. This sculpture is a work I felt I needed to create, one that shares with you ideas of strength, loss and how we hold it all together.

 

For a long time, and especially in the last couple of months I (as well as Emily) have felt quite fragile, and that each day we are just holding ourselves together for Ned, for Lucy, Eleanor and Gilbert. A fragility borne of days, weeks, months, years of battling this cancer and all the implications of that for our family.

 

I recently came across Kintsugi; I’d seen it before, but it captured my attention again as I saw in it ideas that resonated with my own thinking on strength, resilience and redemption.

 

Kintsugi is a form of pottery where old broken ceramic works are repaired with gold dust, lacquer and resin, thus creating a restored or redeemed version of the old piece. The philosophy behind this is the idea of embracing imperfection, that the cracks and repairs are events in life and help shape who we are.

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 Alongside this concept consider the Apostle Paul’s letter to the Romans where he talks about suffering:

 

“ …but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us” (Romans 5:3b-5)

 

I would hope that the suffering we have endured as we have all traveled with Ned, all the pain, loss, upheaval, isolation, sadness, and immense sickness would build something into the character of all of us. And would draw out that strength that God has written into our DNA.

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The gaps in the sculpture, the missing pieces in the sculpted face: these represent the things we’ve lost in this difficult journey. The dreams and goals that have been abandoned, the careers put on hold, the school life for our children interrupted, their friendships and milestones missed, the sense of home stalled, the skill building hours lost, important events missed, and so on.

 

Kintsugi pottery it’s about restoration, the gold and resin patches the cracks, puts the fragmented pieces back together. The cracks, the suffering, become lines of gold; redeeming us into something new. And this is the work of God in us, putting us back together, holding us together through those cracks. Just as the Apostle Paul says it’s about shaping our character. And this is what my piece is about. God gluing me back together, the great Kintsugi master of us all.

 

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God rebuilds me through the inspiration of my amazing wife. A woman of gumption who motivates me to be a better husband, better father and better man every day.

 

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The prayers of many and the friends who diligently call or text; these refresh me.

 

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The excited embrace of my daughters and their laughter at my jokes, or full body smile from baby son, or the whispered ‘I love you Daddy’ from Ned as I carry him to the bathroom; these repair me. 

 

And finally it is in those few rare moments of time that I have to create art I find restoration: for through the creation of objects I am reminded of the Creator himself and am restored.

Success at What Cost?

This last fortnight has seen such contrasting extreme emotions – the rejoicing high of brilliant 30-day bone marrow results juxtaposed so starkly with the despairing low of Ned’s current suffering. Let me explain in more detail about what’s been going on and what’s ahead…

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What is this result you’re talking about?

Ned showed signs of engraftment at Day +18 (18 days since his transplant on 20th August) but all transplant patients need bone marrow aspirates sent for testing on Day +30, Day +60 and Day +100 to see if any leukaemia cells are making a resurgence at these critical points during this period of high vulnerability to relapse or transplant failure.

What does this result mean for Ned?

Previous MRD tests have always shown (tiny) varying degrees of remaining leukaemia, so this is our best result (down to the lowest recordable amount at molecular level: 0.00000%). It shows that his bone marrow is regenerating purely from the donated healthy stem cells, and at this stage, it seems like the leukaemia has been ablated… finally. However, though this reduces future relapse risk, it does not preclude it altogether. That is an ever-present, life-long risk and concern for Ned. The next test (MRD) will be at Day +60.

Was the CAR-T treatment in Seattle necessary?

Yes! CAR-T, though not successful independently long-term, actually contributed to this result because it reduced his marrow disease significantly (from 58% —> 0.01%) and eliminated his CNS disease… thus allowing him to be eligible for inotuzamab – the miracle drug that finally (and miraculously!) put him into remission in order to have a hopefully-curative 2nd transplant. It was that or palliative care.

Now what?

Now, we attempt to support his body in through the regeneration and healing process, since the collateral damage from a successful transplant can be vast, especially after the cumulative damage on Ned’s little, developing body from years of heavy chemo, radiation, a previous transplant and CAR-T treatment. GvHD (Graft-vs-Host Disease), where the body attacks the foreign cells, is a main contributor to post-transplant morbidity - depending on severity of organ damage, it can range from simple and manageable to severe with fatal consequences, and is treated with immunosuppressants.

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Over the last 40ish days, Ned has been suffering from serious GvHD of the skin and gastrointestinal tract, which has only had a minimal response to the treatment with multiple immunosuppressants. Uncertainty prevails, symptoms aren’t controllable, and investigations continue (he is currently have scopes and intestinal biopsies). Because one main immunosuppressant has caused renal toxicity, the steroid immunosuppressant has had to be escalated, and if you are at all familiar with steroid treatment, you’ll be aware that they can cause severe neuropsychiatric effects (irritation, anger, ravenous hunger, misery, emotional lability; adults have reported wanting to die on high-dose steroids). His rage, hunger and personality changes from weeks of high-dose steroids, have been distressing at best, and since his symptoms continue, the prescription now is complete “gut rest” - in other words, we have had to deny this voraciously steroid-hungry, sick 6yo boy’s pleas for food; fasting him with no definitive end point, because sometimes acute GvHD can turn chronic, requiring ongoing treatment. This has been the straw that has broken the metaphorical camel’s back… for him and us. Whilst so many sophisticated measures are instituted to address the suffering from pain and nausea in paediatric patients, it floors me that there is no alternative to the treatment of gut GvHD: hunger-inducing steroids + nil oral intake. Torture, 24/7; the horror of which is behind closed doors and rarely witnessed by any healthcare staff, and only mildly placated by cuddles.

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And today... in fact the whole past sobering week... it has all just seemed too hard; many tears have been shed. After wailing heartbreakingly for “just a little bit of porridge?”, he curls up in a foetal position in bed, silently whimpering and refusing to look at us… over and over again. Today, we are not the parents who are feeling victorious and triumphantly battling on; we are broken and are relying on God’s strength alone. Today’s moments have been full of fragility, anguish and raw weakness. Because despite what you may assume of the resilience of a child who has endured more than 4 years of discomfort and pain (not just the collateral damage from disease itself, but additionally, the ramifications of human error – multiple failed IV attempts, accidental medication miscalculations or omissions, theatre delays, burns from leaking chemo, misplaced nasogastric tubes); what you may assume of the parents who have repetitively born the brunt of his anger, misery and despair, who have guiltily had to enforce restrictions or physically restrain with silent tears streaming, it never EVER gets easier. The only thing worse than a defiant child raging against you is witnessing that same spirited child shriveling in defeat, resigned and broken from the numerous lost battles and protests simply to yield a sense of any independence or control. Being socially isolated, constrained to a hospital room with a closed door (and only the same 4 support adults ever allowed in - me, Seth and my parents), separated from beloved siblings, living in a fishbowl of healthcare staff, enduring excruciating pain, nausea, headaches and so many other discomforts, lacking any choice or independence (even going to the toilet) due to muscle atrophy and an attached heavy pole, living at the mercy of visiting healthcare teams or alarms, having medications and procedures enforced, and now, being denied food... it’s just no life for a little boy.

“When You don’t move the mountains I’m needing You to move;

When You don’t part the waters I wish I could walk through;

When You don’t give the answers as I cry out to You;

I will trust, I will trust, I will trust in You.”

© Lauren Daigle

In This Moment

 “The day before my child was diagnosed, I wasn’t a cancer parent either.”

And yet, here we are, into our fifth year of trying to sustain one child through this ugly combat, and parent three others through their sibling’s suffering.

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25 days have passed since Ned’s second bone marrow transplant, and we’re now amongst the “old hands” on the RCH oncology ward. Ned deteriorated very soon after the donated cord blood cells were given on 20th August, with odd patterns of unusual symptoms that presented a dilemma for many of the medical teams involved. A severe top-to-toe (extremely itchy) rash, combined with fluid imbalances, fevers, headaches, pain, nausea, delirium, rare medication reactions, low blood pressure, and electrolyte disturbances presented a confounding picture with evasive answers. After many investigations, a skin biopsy revealed it had been early graft-vs-host disease (GVHD) all along, but with a different pattern because he’d had CAR-T prior - using Eleanor’s cells (in his body from previous transplant)! The relief from this discovery was short-lived as the treatment was high-dose steroids... And many a cancer parent is intimately aquainted with the hellish responsibility of caring for a sick child on high-dose steroids!

A few days later, on Day +18, the blood results revealed that the new stem cells had engrafted, and he’s been slowly but steadily improving since then, thank God.

Yet another small victory, worth a celebratory hug and some rejoicing… but in the grander scheme of things, in my current, ever-increasing, weariness-induced pessimism (arguably justified given the lead-in we’ve had), there is still a very long, torturous road ahead. And now we await the all-important Day +30 bone marrow test results in the coming week, and then the “magic” Day +100 mark.

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You see, the treatment regimes for most childhood cancers are really quite antiquated due to a disproportionate lack of funding compared to adult cancers. Whilst hundreds of new drugs have been developed for various adult treatment protocols since 1980, only 3 have been developed for paediatric cancers - even despite there being greater long-term tolls and more numerous years of life lost from paediatric cancers. I could go on with statistics to prove the disrupted quality of life, the severe side effects and organ damage, but the harsh reality is that even if a child survives childhood cancer, there will most likely be long-term ramifications, sometimes life-limiting, for many years to come.

Sometimes, more often than not when my mental health is struggling, it is just all too overwhelming for me to ponder ahead or dwell on. So, despite being born a ‘type A personality’, with plans A, B and C, as well as plans D & E coming out my ears, and now being subjected to a life ruled by the whim of a most unwelcome, temperamental, insidious disease, with 4 dependents, I’m finally starting to prefer, by sheer necessity, a new mantra: “taking each day as it comes”. If, after another sleepless night, I ruminate about my lack of rest and wonder about how I’ll survive the coming day or week ahead, I’ll dig myself unnecessarily into an even deeper hole than I was before, so I’ve had to find a better way. Hence why I’m now teaching myself how to “live in each moment”; leaving all previous suffering, hardship and discomfort out of each precious moment. Because God, in his mercy, graciously gives me the aliquots of strength I need to get me through just one moment at a time. That’s all I need to focus on... how I will serve in THIS moment.

In this moment, I’m getting to cuddle my over-tired, but beautifully-soft 1-year-old while he breastfeeds.

In this moment, I’m getting down to level with my 3-year-old’s protesting eyes and speaking my love to her through her shrieks of stubbornness.

In this moment, I’m pausing between the baby’s breakfast spoonfuls to watch the tree leaves cast dappled sunshine on the path outside our hospital window, as staff rush in to work.

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In this moment, I’m relishing the fact that my 9-year-old feels safe enough to ask me the difficult questions, or thrash out some complex emotions that she’s been dealing with.

In this moment, I’m dragging myself out of bed, casting the numerous preceding night wakings from my mind, to cuddle away some pain and comfort a night terror.

In this moment, I’m sipping the warmth of what has become our wellness-giving daily coffee.

In this moment, I’m savouring the warmth of direct sun on my face while enjoying a quick walk outside with my husband.

In this moment, I’m wiping away Ned’s tears, speaking words of love and reminding him of his preciousness, while also firmly holding his arms down during a procedure.

In this moment, though my voice quivers and siblings are screaming for attention, I’m singing him his favourite bedtime song over FaceTime.

In this moment, I’m carrying him to the toilet, pushing his pole, savouring the closeness of his frail body in my arms.

In this moment, though the smell of fresh vomit is pungent, I’m feeling the tension of his preceding nausea draining from his body.

In this moment, I’m rubbing in slathers of thick moisturising creams whilst simultaneously holding down cold packs to reduce the intensity of his constant widespread itch.

In this moment, I’m quietly rejoicing that we got another day. Another day with our Ned.

I can do all things through Christ who strengthens me.” - Phil 4:13

Day Zero [Take 2]

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Today is Bone Marrow Transplant Day #2. A day we never dreamed would be necessary. But now, a day that we’re so thankful has transpired. And thankful, too, that we don’t have the same lead-in as his 1st BMT (from Eleanor) on 27th November last year, when 5 of our 6 family members were in hospital!

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This humble gratitude, however, does not translate into unbridled joy. For with another chance at life for Ned comes a difficult road ahead for him primarily, as well as each other member of our family.

To be honest, though Ned’s been mostly well this last week, the despondency that Seth and I are feeling about what’s ahead is weighing us down. He’s just that little bit older and more aware now, and the girls (and we) are just that little bit more homesick for Tasmania. The initial period here from June last year was a “break in routine”, A bone marrow transplant. Now, a year has well and truly passed, and we’re yet to return to our home and life. Days can feel like monotonous plods through the hard work of caring for a sick dependent 24/7 in isolation, keeping up with a crawling baby, navigating a 9-year-old’s wildly fluctuating emotions and an energetic 3-year-old’s tempestuous personality; and it takes a herculean effort to show grace and not let resentment simmer. 

Having said that, it is because of our loving Father and you, our ‘village’, that we are still standing, that we are still plodding forwards and not backwards; that Ned is still drawing wee bottle animals, building Lego, and waving out the window to his sisters on the grass. Thank God that Ned has even miraculously made it to this point. 

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One week ago today, Ned was admitted to the Bone Marrow Transplant Unit at RCH to begin ‘conditioning’ – wiping his bone marrow and preparing him to receive the transplant. This has involved hyper-hydration (hence the numerous wee bottles) and heavy chemotherapy. Today, he will be pre-medicated with steroids and have irradiation (at Peter Mac) in the morning to dull his immune system so he’s less likely to reject the graft. Following that, the donor cells will be infused over a relatively anti-climactic hour in the afternoon. Day Zero.

Then we begin the long recovery, getting worse before getting better… losing his hair (for the 6th time), waiting for engraftment, then healing from side effects and any organ damage, then re-feeding, eventually discharge from the unit, interspersed with critical, frequent bone marrow test results, then Day +100… then home. Or so we hope and pray.

Thank YOU for all your support thus far. May God continue to hold us and give us the energy and strength to face each day. 

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"The Lord himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged..."  Deut 31:8

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.”