Ready or not, here I go...
The time for "watch & wait" is rapidly coming to an end, with treatment beginning at the end of March.
I’m quite taken by the name of the Clinical Trial I’ve just signed up for! “Celestial” - it sounds one of hope, promise and heaven. And as I try to compose this email to you, I sit with the tension of wishing I was not having to sign up for it, and being so thankful that it’s started just when I need it.
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)…
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?
Not the ideal timeline and understandably frazzling -- but praise God there is something other than chemo. ❤️ Will absolutely pray.
Absolutely pleased you have this amazing chance Kylie. All our love and prayers always!