Let me catch you up a bit, because it’s been a time of rapid momentum since my last blog post and things have come to a head faster than I was anticipating.

Where were we up to? Yes, I’d just celebrated my birthday & was having monthly blood tests. Well, I’ve had two of them since then, and in neither of them has my hemoglobin come back to the “safe zone” of 100; it’s hanging out just under the line, consistently sitting between 95 - 98. This is a signal for specialists that I need to start treatment.

Now, you also know, I’ve been doing lots of good eating (fresh, raw, vegan), juicing, believing, and honestly, thanks to God’s goodness and grace, I feel great! If you’ve seen me recently, you would not even guess that I had an unwelcome intruder proliferating rapidly, bent on my demise; so I was prepared to hold out as long as I could. Sometimes it takes more faith to believe a piece of paper telling me something’s wrong, because my experience is just so contrary to that.

After the last blood test things didn’t look better or worse, so when I got a phone call asking me to come in for an appointment the following week (pretty speedy for our health system), I was surprised and a little discouraged that we were already arriving at treatment discussions (only 16 months after diagnosis - very short for CLL). Remember, with CLL, no treatment has yet proven to be a cure; it is only considered an effective time buying mechanism, so treatment is something you generally want to delay for as long as possible.

Introducing “Celestial”

And it was there, just 10 days ago, that “Celestial” was offered to me. A clinical research trial investigating two different drug combinations and their effectiveness on CLL. One drug combination has been approved in NZ for 3rd line CLL, while the other is really new (like only 197 people worldwide have taken one of the drugs) and there is a lot of excitement in the hematology world about it. While, both combos have their risks, they are far superior to the only funded option I had for first line treatment in NZ - FCR, chemo. These trial drugs seem to kick to CLL into a deep remission where a high MRD (minimal residual disease) is achieved and can last for many years.

So…..whether I was ready or not, here I go!

This week I went in to sign consent forms and for all my baseline tests - so many blood vials, going all over the world! In early March, I’m booked in for CT scans and an echo cardiogram. Once all my results are reviewed by the trial’s panel, I’ll receive an official invite and treatment is likely to kick off on 26th March.

What does this all mean for me and my family?

The ripples of this go both deep and wide. It’s hard to convey all the practical & logistical aspects to it, not to mention physical, mental and emotional journey ahead.

So for now, I just wanted to keep you updated. And I will absolutely keep you posted as the journey unfolds.

If you’re the praying type, I’d like to set up a special Courage, Love and Legacy newsletters which will be more focused on prayer requests and areas I/we need specific covering and support. I understand there will be reasons some of you would prefer not to receive those emails, but if you’re keen to be in that circle of support, please just click the link below to sign up (or if you’re not a substack subscriber, just reply to this email & I’ll add you in)…

Sign up to Prayer & Support Newsletter

And that way, I can continue to share stories, reflections and encouragements here, while reaching out and sharing my petitions there…

In closure today, two thoughts…

Where I struggle most with this step, is the very dependent position I find myself in. The need to depend on a bunch of drugs to keep me alive. The need to ask for help, rather than being the one available to help others. And I think dependency is a hard one for most people to embrace in our independent, self-sufficient culture. Yet it is here we find community, right? Here we experience love. Here we experience the grace and the goodness of God and others. So bring on being refined and learning to be dependent.

What I’m most aware of, is that sometimes answered prayers come in surprising packages. My cancer levels were continuing to climb and we felt trapped between and rock and a hard place when it came to treatment options. I was scared of chemo and the impact on our young family. And we couldn’t really afford the other approved drug in NZ. And then “Celestial” … only 4 people in the Bay Of Plenty and just under 700 around the world will be given the opportunity to access these superior treatment combinations. And I will be one of them. Monitored closely and cared for meticulously all the way. Not quite what I thought I was looking for, but a door of hope and promise has opened, just when I needed it to. How good is God?

With Courage, Love and Legacy, always

Kylie

I’m finding it’s a delicate balancing act, there’s a real tension, to convey be truthful about the facts and to also honor my lived experience. They’re opposing and quite contradictory… let me explain…

Let’s start with the FACTS:

(so that we can move beyond them)

• My Lymphocyte count continues to climb at an agressive and prolific rate. It’s now around 250,000 (normal is 4,000-10,000, so I’m right out of the park)

• My haemoglobin and platelet count are verging on so low, that if they get any lower it indicates time to start treatment.

• My lymph nodes are now visibally swollen under my chin and can be felt all over my body.

• All these indications should start amounting to other symptoms such as fatigue, sickness, night sweats, a swollen spleen or liver (& the list goes on).

• If my cancer indicators continue the way they’re going, there may be an opportunity to go on a clinical trial in the New Year.

The combination of all of the above caused my specalist to note, quite emphatically, that we’re now in territory where they get nervous and want to closely monitor me. Should sound scary right? BUT

Then there’s the FAITH factor:

This is where the facts are not impacting my peace, my resolve, my hope, not even my health.

• Although immune compromised and with a household of kids & winter bugs, my own body did not succumb to any sickness this winter - praise God

• I’ve had a periods of wrestling and wondering but have, again, been gifted a peace that surpasses all understanding and am so excited by what life has in store in 2024.

• In the last month or so, I’ve undertaken a lifestyle programme (Square One) focused on healing and health and I feel great!

• The core components of the programme are faith, food, fitness, focus & forgiveness and I’ve made some radical lifestyle changes to support healing in my body.

• Faith: I’m not expecting miraculous, instanteous healing just yet (there’s a very good reason for that, which I’ll share in another post sometime soon) but I’m finding strength in leaning into Gods provision, protection and nourishment of my body, mind and spirit and trusting in His will for goodness in my life.

• Food: I’m juicing and drinking 2kg of vegetables daily. Mostly carrots. This is resulting in my skin developing an early summer tan, which is a lovely shade of burnt orange. And while not a rabbit (as some might tease), I am eating (mostly) raw vegan meals to receive from the earth all the nourishing, cancer fighting vitamins and minerals as I can. Just look how delicious my meals & juicing ingredients look:

• Fitness: At the tender age of 41, I’m finally listening and attending to my body (revolutionary move!). Instead of completely neglecting it or alternatively, demanding haphazard rigourous exercise, I’m now focusing on regular stretching, strengthening and daily movement.

• Focus & Forgiveness: There’s a mix of stuff in this area - clarifying focus & removing clutter (in projects & problems), detoxing from stress, letting past hurts go…release and receive.

All of this delicious and nourishing activity is amounting to a life that is embracing living, loving and being kind to myself and others. I’ve been guilty of being an overly busy, productive, output focused person most of my life. I’m loving the slowing down this season requires and the opportunity to learn to abide in God’s grace and care.

So there you have it: facts and faith. I find faith far more inspiring. What do you prefer to focus on in your journey?

So my results... well, as you can probably guess by now, they weren't wonderful, but they're not dire either. My WBC has risen to 193,000 (Lymphocytes 191,000) which is up from 121,000 in April. Normal range is 4-11,000 so I'm well out of the ball park. From what I understand, all this means is that I have a high proliferation rate of the abnormal cancerous cells in my blood.

The good news is that my haemoglobin and platelets are still in the normal range and I'm not experiencing any significant "constitutional" symptoms (night sweats, serious fatigue, weight loss, bruising etc). Also all my genetic marker test results are back and are all currently the lower risk ones - detected 13q14.3, no CD49, mutated IGHV, unmutated TP53/ 17q13.1... which is worth being optimistic about.

My liver function tests are showing some slightly elevated factors, which we'll be keeping an eye on.

So the conundrum continues.

Today, I feel like an absolute anomaly in the CLL world: I have low risk markers, but high proliferation/ aggressive WBC rate; I have high levels of cancerous cells but am experiencing very few physical symptoms of disease progression; it's an older persons disease, but yet I'm young & healthy.... I'm just completely outside the box! (which my friends will probably laugh at because they know this already).

Today, even more than when I wrote my last blog - I really do feel like a lego T-Rex is breathing down my neck... is there really a threat or not?

And so the journey of watch and wait continues - my next progress report will likely be in Nov... until then, may we all be blessed with Courage, Love and Legacy x

Today, the results are in and they're all good news:

• My WBC has decreased to 121,000 (LC 115,000)

• I don't have the TP53 mutation at this stage in my journey. This was worth 4 points in the risk assessment so a major relief for us all.

• Still waiting on IGHV mutation status - but this marker has more impact on effectiveness of treatment and the length of remission times between treatments than the actual disease progression.

• My platelets and hemoglobin levels are marginally below normal but nothing to worry about at this stage.

• My FISH test shows I have a deletion of chromosome band 13q14 which is a positive prognostic marker.

Given all of that and that I only have a few minor raised lymph nodes, am not experiencing regular and debilitating infections, my energy levels are pretty consistent with any mother of three young boys, and have no other health issues, my Specialist feels we can push back the discussion of treatment and resume active monitoring! That means blood tests every three months and another appointment in 6 months time. Yippee!

Many people, including myself have wondered, what causes the reduction of WBC in my blood? I've tried googling this phenomena, without much luck of finding clinical information on WBC fluctuations with CLL, but I also posted a few social media queries on CLL sites and it seems, for some of us, this is an experienced occurrence. My Specialist said simply "it's not surprising behaviour." I don't know if I'll get more of an explanation than that - but I'm grateful to God that it has reduced, and am thankful for the prayer, love and support I've received over the last few months, as well as an incredible time with family and friends canoeing the Whanganui river last week. Courage, love and living for legacy may not be curative supplements, but they definitely help with overall outlook and spirit.

Now that I've got a bit of time to breathe, I'm planning on using this time wisely - to focus on my overall physical health so that if/when the time comes for treatment, I'm in the best place possible to endure it. Although watch and wait feels counter-intuitive when you have a cancer roaming around your system, with CLL, time to first treatment is a gift, which I am thankful for.

What you often don’t hear about CLL is that it has a couple of variations that are more aggressive. The White Blood Cell count rises rapidly and the cancer cells are less responsive to treatment with shorter remission times.

The Raw Data

And, unfortunately, it looks like I've drawn that straw. My WBC was 44,000 when first diagnosed, a week later 53,000; three months later 128,000; then this week (a month later) up to 160,000 (fyi normal adult range is 4,000 to 11,000). One known risk factor for CLL is a WBC doubling in less than 12 months – so my variation of CLL, which has more than doubled in less than 3 months, is busting out of “slow and chronic” with a definitive display of speed.

What we discussed with the specialist on Tuesday is why that might be happening. Turns out there’s a couple of genetic mutations – one I don’t want (TP53) and one I do want (IGHV) - that can significantly affect the cancers progression and my overall prognosis (survival).

TP53 sounds like the worst mutation, a morbid mutation really. In a CLL risk assessment score, it gets 4 points, while all other listed risks only get attributed a 1 or a 2. A TP53 mutation knocks life-expectancy down by a significant number of years (think 8yrs instead of 25yrs).

On the other side, there’s an IGHV mutation – this one, turns out, I do want. If the IGHV is unmutated then that’s another 2 points on the risk assessment.

As much as there’s plenty on the internet explaining in great scientific detail the ins & outs of these mutations, I have never wanted to become an expert in genetics and, in all reality, there is nothing I can do about which of these chromosomal variations I have or don’t have anyway.

What I do know is that it’s likely I have at least one of them. And I also know that they significantly impact the cancers progression, treatment, response to treatment, remission times and my overall survival. And that's where the graph below, with it's short sharp high risk trend lines, gets a bit overwhelming.

The short and sweet of the specialist appointment is that I’ve sent my blood away for genetic assessment to see which of these morbid mutations I might have and the results of these will determine which treatment I receive in the not-so-distant future.

What all these facts and figures do not reveal is how massive this news is to process. It all feels very clinical and scientific. Very biological and academic. A table and a graph are what we now refer to to represent my life chances.

Mortal Musings

But this has huge implications for me and my family. If I consider it too closely it’s devastating. The space between the slow CLL and the aggressive CLL has become…

• …the difference between me imagining retiring one day and cuddling my grand-babies to envisioning a possible future where I might not be around for my own children as they grow up.

• It’s the difference between anticipating reaching 70+yrs or counting it a blessing if I'm fortunate enough to get to celebrate my 50th birthday.

• It’s the difference of carrying on as “normal” (as people with CLL are encouraged to do) or living a life supported by treatment.

Today I realized that my physical existence (however long or short it is) is no longer an extension of the health choices I make, but will now, mostly be reliant on medical intervention, care and a cocktail of drugs, specifically tailored by buy me time. This in itself is a huge adjustment in perspective for me. I don’t quite know what to make of it yet. It’s all too new, fresh and the data to raw.

Courage, Love and Legacy

So apart from compartmentalizing, being in shock and denial (which I’m sure are all part of the process) how to avoid succumbing to the apocalyptic abyss of the high risk trend lines? In the last few weeks, I’ve found myself wrapped up in the extra-ordinariness of the ordinary. No longer does time feel like it’s infinite, no longer do the temporal things in the day-to-day feel mundane, no longer do I take for granted a breath, a breakfast, a cuddle or a comment. It all feels heightened with the humility of a finite earthly existence. I’m honored to be here in this moment. And the next one. And the next. A new-found pleasure is blossoming in my spirit for each unique gift of a moment. And because I don’t know how long my CLL journey will go for, how long the life-support system might sustain me, time has now become a treasure.

While we draw breath, let’s not forget to celebrate this precious life we live - I’d love to hear what you treasure most in the ordinary and what you find extraordinary in your day-to-day…