25/08/2026
I’ve been putting off writing this update for a couple of weeks.
Not because there hasn’t been anything to say but it’s quite the opposite, actually. Nothing is straight forward on this journey as you all know.
There has been so much to say that I haven’t really known how to say any of it because it’s left us being very confused. Every time I think I understand where we are, another result comes back or another conversation happens and suddenly we’re looking at everything from a completely different angle again, which as we all know happens daily with our Keeks…
Here we go, (sorry it’s a longggg one and I guess you’ll understand why it’s been so difficult to explain over the last coupon of weeks)
Kaitlyn’s last bone marrow result is clear. Clear of detectable measurable residual disease. I’ve actually been apprehensive to write those words. The last time I excitedly told everyone that Kaitlyn’s bone marrow was clear, we later discovered that the information we had been given wasn’t correct and we were all totally crushed.
This time however, I waited and I asked a ton of questions. I double and triple checked, I made sure I understood exactly what I was being told before I processed it.
And it has been confirmed by multiple consultants.
This is obviously incredible and the news we’ve wanted to hear since January 2025 after her stem cell transplant. But, because apparently nothing about this journey can ever be straightforward, the immediate question becomes…
What does that actually mean now? I’ve asked this question a few times now and the answer is still we don’t know yet. She has been asked to have another bone marrow biopsy today. If this marrow result also comes back with NPM1 not detected, giving us two consecutive non-detected results, we have been told that then becomes really significant and potentially changes the conversation again.
Because the treatment options that were discussed with us previously were based on where Kaitlyn’s disease was then. So now we think could her eligibility for certain treatments have changed? Could options that weren’t available before become possible? There are still more pieces of this ridiculously complicated puzzle that we need.
Kaitlyn needs a fresh MRI so they can look again at the lesions in her brain and see what is happening following her Intrathecal treatment. She has had 4 consecutive clear CNF results, which has prompted another change in Kaitlyn’s intrathecal chemotherapy. This has now been reduced from weekly to once every two weeks, and today is an IT chemo day.
We are still waiting for the results of her VEP testing, which we are really hoping we might finally get today. Im going to be that annoying nagging mum trying my hardest to get them for her 😅
We’re expecting it to be around three weeks (again) before we have all of those results and hopefully a clearer idea of exactly where Kaitlyn stands and, most importantly, what happens next.
It feels bizarre to be writing an update containing such an incredible result and still not really knowing whether we are supposed to throw a party, panic, hope, prepare ourselves for another curveball… or somehow do all four at once. I think we just need to keep doing what we’ve undoubtedly become very good at doing and take it one appointment, one result and one day at a time and breathe (and rock in a dark room too maybe 🥹)
I’ve really not been myself lately. I think the last few months have finally caught up with me. Pair everything that has happened with the six-week summer holidays, three children, two with additional needs right now, appointments, hospital trips and the general chaos of trying to keep normal family life, I am knackered 😂 My soul is ready for routine.
I’m ready for school mornings, quieter days, knowing vaguely what day of the week it is and having a tiny bit of structure back in our lives. There is still so much uncertainty ahead of us and I need to be prepared for that.
But I’ll take the wins when they come! And today we know something we didn’t know a few weeks ago. As it stands, Kaitlyn’s last bone marrow result was clear. And after everything she has been through, I’m going to allow us all to hold onto that while we wait for the next pieces of the puzzle to hopefully fall in the right places for her.
One day at a time. 🎗️🩷
Please just tell me I’m not going mad 😅 and this is not a normal situation to be in! I just have no idea how to describe how this feels to someone. It’s madness….
