Initially, Nahlas blood counts were astoundingly high. I don’t have the exact numbers but I will endeavour to gather her medical history as it is so interesting to watch it unfold.

It took us about ten days to gather all the information we needed to start a chemotherapy protocol. Rough estimation of cost of the entire course of treatment at the time was about $20,000 – $30,000 over the course of a year or so.

To begin with, we started with a relatively non invasive protocol. We started with Chlorambucil administered at home in tablet form and 25mg of Prednisolone daily for fourteen days. I really need to get all of her blood test results for this as it was almost five years ago and my memory is good, but it is not that good. However, I do know that the first 14 days her white blood cell (WBC) counts dropped dramatically. I believe her initial white blood cell count was around 97,000 and within a six week period, we had dropped down to around 10,000. Which if you know anything about blood counts, that is normal.

I will be sharing her protocol and the calendar I used in the next post. I want to share the complex nature of treating cancer. Usually, we as humans undergo these treatments in Oncology wards, that was not the case here so I really want to share this with you all as tie goes on.

Now, Nahla has cancer of the blood, specifically, she has cancer of the lymphocytes, the cells specifically designed to fight infection. I am not an oncologist, but from my understanding and years of experience and research. Less than 2% of her white blood cells were effective in the fight, so what happens is when there is an infection, the body begins to see that it’s immune system is ineffective and begins to pull on reserve cells. Overtime, we exhaust the reserves and the body decides to release immature cells. These are called lymphoblasts. They look physically different and this is how and why our hero, Dr Irvine, found her cancer.

So let’s just put this logically, because I am the Queen of logic.

Infection, release WBC, WBCs are ineffective, release more WBC, still ineffective, release more. Still ineffective, run out of reserves, release lymphoblasts.

So from here, the WBC count is so high the body becomes crowded and this results in the swelling of the liver and the spleen. This is how and why swelling of the liver and the spleen are a side effect of immune based cancers.

So we had a win here. We went from almost 100,000 WBC count, to less than 10% with her Lymphocyte count going from around 67,000 to approximately 4,400. Now there is a secondary cell that is created on the same line as the Lymphoblasts, they are called the Neutrophils. Remember these as they come into play very shortly.

The next part of our story begins with the topic of non response to Chemotherapy. Nahla stopped responding to our original protocol and began to pull out of remission, at which point we did change too a more aggressive form of Chemotherapy.

Now I want to remind everyone here, I am but a simple Real Estate Agent who did not finish high school and at the time, I was 26 years old. I am astoundingly privileged that my brain is wired for science so I had the capacity to begin to understand this. I have the ability to take the complex nature of this disease and dumb it down into a space where I can understand it and keep track of it.

However, if any oncologists or veterinarians stumble across this, please please please comment any form of corrections as appropriate. I have unpacked this in a way that I personally understand and my goal here is an education piece around my experience and I am aware that some of this information could be incorrect.

As this story unfolds, I will be diving back into the more emotive state I was in. The lessons I learnt from watching Nahla being sick, processing my grief and coming to a space of simply deciding that this was not the way our story ended was a real journey.

So I will leave this portion of the story here for the moment. The reason being is I want to pause before we start to unpack the new Chemotherapy Protocol because at this stage, I was in full blown survival mode. Incredible things can be accomplished in survival mode and I have spent a lot of time learning how to give my past self credit to how damn strong she was and what she did to get us out of such an awful space. My next post is going to be a much larger reflection of the trauma response, organisation and falling really deeply into resentment and grief.

So hold out with me, we will circle back.

Sarah x