The diagnosis

 You were diagnosed on the 16/12/2019 with Acute Myeloid Leukemia (TP 53 mutation), that same week you were transferred to the ICU, this set a pattern for you. You could be well one minute, then seriously ill the next.

I kept on working, juggling childcare, and planning for Xmas. That set a pattern for me, clinging on to normality because everything else was chaos.

 I knew you had leukemia before you were formally diagnosed, the GP dismissed your symptoms as a sinus infection, I wanted to scream...I knew this could not be right. I told you to demand a blood test, and when you finally did, our world imploded, they admitted you to hospital straight away. Again this set the tone to what was to come, I was always a step ahead of the doctors.

Hospital became your home, I spent all my free time with you, back and forth between work, hospital and our home. I learned everything about the disease, and knew our story would not have a happy ending, but I wanted us to beat the odds. After you left the ICU you started chemo, after 2 rounds the treatment  did not get you into remission. We sat down in April and cried together, I didn't want to be a single mum, we were meant to raise our children together. After I recomposed myself, my practical nature took over, we created a Black Book of Doom, with all your passwords and everything was transferred to my name. You were diligent and did everything with a humble courage. 

I pushed the doctors to try Venetoclax, at first they said it wasn't going to work, but I persisted, so they relented and you were transferred to King's College. Whilst you were fighting for your life, I kept things going at home. My temporary contract with my company was coming to an end in June, I needed to find a new job, this was April 2019 and we were in lockdown. Could life not give me a break! I applied for a few jobs,  I wanted one particularly badly; 2 reasons, close to home and good pay. Our children crashed on my interview, I thought this is it I won't get it, damn children :-(

During the lockdown many things happened, some happy I got the job, I drove your mum back to France all the way to Brittany, my mum arrived from Brazil (special circumstances due to your health). The saddest thing was, I was not allowed to see you for 5 weeks, words cannot describe the enormity of it, you were distraught and how could you not be. King's College left a bitter taste in our mouths, nurses were efficient but they lacked warmth. In Brighton Hospital we were treated like family, and it was only 30 minutes away from home rather than the 2 hours it took me to get to London. 

Fast forward to May.

We finally had a lucky break with your treatment, Venetoclax kicked cancer's arse, you could finally have a bone marrow transplant (BMT). BMT is a very risky procedure, there are so many things that could go wrong; rejection, liver failure, high risk of infection... the list is endless. You had the BMT and things were looking up, you were about to come home in July, when we hit a massive snag, you were diagnosed with veno-occlusive disease, the hospital called me on the 26/07/20 to advise me that you were likely to be moved to ICU again, I was numb. The following day I started on my shiny new job, true to form I didn't say a peep, other than explain that  I was expecting an urgent phone call that could result in my first day  being cut short. I switched the auto pilot on and finished my first day.