“Three years. What? He needs to be treated for THREE years…?” Our consultant nods slowly.
I mean, I’m hugely grateful; unlike 50 years ago, there is effective treatment available. I guess I had just never considered it would last this long. The day Joshua rings the hospital bell that symbolises his path to a drug-free future, will be 23rd January 2023.
Another element to his care that caught me by surprise is that Ben and I would be administering a very large amount of it ourselves at home. Welcome to your new career as a community nurse.
I was a bit stunned by this, but in some ways, thank fuck for that because otherwise we would be living in hospital permanently. And let me tell you, (necessary as it sometimes is)… IT’S REALLY SHIT. We are in the most favourable situation, living in a city literally 10 minutes from an amazing unit. But, it’s still hard on so many levels.
So, Joshua has started on a well-researched treatment path that all children with ALL will follow. It is split into 5 phases. The first 4 take about 6 months to complete. The final phase lasts years.
Induction – 5 weeks (November – Christmas)
This is the first and most brutal. It uses intensive treatment to destroy as many leukaemia cells as possible. They then test Joshua to find out how much disease remains. This determines how much treatment he gets in the next phase.
Consolidation (3 weeks)
More of the same here, but if you have a good result from phase 1, you get 2 drugs for 3 weeks. If the leukaemia hasn’t been knocked back enough, you get 6 drugs for 9 weeks. I know which option I was rooting for.
Maintenance (8 weeks)
This should be a relatively quiet 2 months with less intensive treatment occurring.
Delayed Intensification (7 weeks)
This phase ramps up the intensification again, to destroy the smaller number of leukaemia cells that are still left behind.
Maintenance (just under 3 years)
This is the longest, but most gentle phase of treatment. (But when they say gentle, he will still be having chemotherapy every day.) It will hopefully be done with Joshua accessing as much of his life as possible. For example, he should be able to start school when he’s 5, once they have been briefed on how to handle his condition.
I’m currently unable to consider this bit.