6 months in … and temperature spikes can still de-rail life.

6 months, almost to the day, that Drew was diagnosed with ALL (Acute Lymphoblastic Leukaemia). 6 months. Half a year.

I write this, from a hospital bed on a Friday morning at Worcester Royal Hospital. Drew had a lumbar puncture, and IT MTX chemo on Wednesday. We’re now suffering the side effects. This wasn’t a new procedure for Drew, he’s had the LP & IT MTX many times in his treatment to date. This is a new reaction though.

When did it become OK in our lives to normalise this ??? “Oh, it’s just the Chemo”, “if Drew feels sick, we’ll give hime some anti-sickness medicine”, “if Drew is in pain, we’ll give him some Morphine” ….

By the book, a temperature between 36 & 38 is OK. ‘Normal’ for Drew is high 35s, 36. Each child is different. Drew just runs a bit colder.

Any parent of any child undergoing treatment for cancer (or indeed a cancer sufferer themselves!) knows this is a call to arms .. the temperate spike. Drew hit the 38 threshold (38.3) yesterday, this is not good. Within a matter of minutes, he was visibly not himself. Subdued, lethargic. Drop everything and get going …

Thankfully, there’s a well practiced path to walk here. We’ve walked it many times.

Parent 1 calls riverbank ward, Worcester Royal hospital. There’s a quick triage, bed availability assessments (as hes a cancer patient attending a childrens ward, he needs to be placed into an isolation room), and a plan put together for Drew’s arrival.

Parent 2 grabs overnight bag, grabs and top up supplies (food, tech, chargers etc) .. we learnt very quickly kly, always have a bag prepared.

Parents make arrangements for sibling cover (network of friends on standby)

Drive to hospital, ideally P1 & P2, so P2 can come back with the car.

On arrival, Drew is assesses by the nurse in charge, then he is hooked up to antibiotics within 1 hour of arrival. Whatever it is causing the temp spike needs to be diagnosed and understood. He can become very ill, very quickly. Nasal, throat & groin swabs are taken. Blood is extracted for cultures & levels assessments. If no bed is available, this can all be done in a side room until one does become available. This has happened before.

Then, we wait for the results (and consultant assessment). Protocol is 48 hours admission, with antibiotics ever 6 hours. There is a step-down process where 48 hours can be fast-tracked, also the 48 hours is shorter when in ‘maintenance’.

Much waiting. The hospitals are geared up for this. Parents are looked after. Children are monitored and treated. But stress & anxiety levels are high.

Thursday night, Drew hit an all time record for temperature, 40.3. We’ve never seen that before. A few other readings high 38s. Means paracetamol for Drew, and no sleep for Dad.

Today was an important day for me. I’ve needed work & the work environment / collegue interaction etc to focus the mind. Although, I’ve taken time out on this 6 months journey, getting back into it has helped. Today was the day, planned in advance, I was to attend my office (been many months since I’ve driven to Coventry, working from home theoughout) .. attent to office, meet my team, plan for 2023 .. and then have a post work drink. I’ve leant on my colleagues alot on this journey. They’ve picked up alot for me whilst I was off. Today would have been a chance to say thanks, face to face.

Despite all of the planning and forethought that went into my work event today, family first. Drew’s temp spike yesterday hit hard. I knew, the second it happened, what would happen and what it meant. All plans undone.

A previous version of me would have had difficulty processing this.. work/career was a priority. Disruption to plans unsettled me. Now, I’m in a different world. Almost numb to anything that goes on around the centre of my universe, Drew. I feel less guilt in managing these events. I know I’m focusing on what’s important.. the rest just doesn’t matter (for now).