So near, and yet so far from the end

I made some notes last Wednesday. Sorry it’s taken a week to post:

________________________________________________________

07.00 Henry snoozes while we dress him. It was a reasonably late one again last night. I’m no longer sure if that’s drug side effects or lax parenting. I’ll go with side effects!

07.15 Taxi to Gt Ormond Street. Henry tells jokes on the way – of them, my favourite is: “What’s brown and sticky?” The nice and dry pause: “A stick.”

07.45 We’re not the first to arrive.

Weigh in

H seems to really enjoy this today. He’s being a real scamp.

Weigh in, blood pressure, blood oxygen levels, temperature, height check.

08.00 Allocated a bed and off we go.

Waiting.

08.20 Checks by nurse consultant. Reflexes, last eaten when? are you well? searches for leukaemia hiding near lymphs.

08.40 Anaesthetist visits.

09.00 Corridor cricket and football.

09.30 Cbeebies

09.45 We’re ready for you.

10.00 I’m waiting for Henry to wake up from the procedure (methotrexate into his spine to stop the leukaemia spreading to his CNS). It’s taken longer than usual for him to wake up which is a bit unnerving. An hour ago, we were playing football in the cubicle on the ward… Now he’s refusing to wake up. The last time I went to check on him the nurse offered to wake him; but last time they brought him round unnaturally he responded violently. Let sleeping dogs lie.

10.10 Still waiting. Once Henry wakes, we’ll pick up his chemo for the next week and head home. Just another round of Cytarabine; some more vincristine, a jab of Asparaginase and we’re into maintenance.

10.15 Still no sign. A young teenage lad has arrived and is encamped on the other side of the cubicle. His mum and two mates are here too. The nurse consultant is looking into his eyes and checking his spine. Lord knows what he’s been through. But he’s calm and polite and unruffled. If only Kipling had spent time here, If may have been even better.

All the meds have taken their toll again. Last week Henry’s hair fell out pretty quickly. But second time round it caused less of a stir. Henry couldn’t give two hoots. But the steroids have fattened him up. He usually has the frame of a racing snake (to quote his Uncle Jim) but he has now definitely bulked up. His face has changed shape too. There’s something other-worldly or surreal about this stage. We can see the end of the intense phase but Henry is still in the midst of his big, big medicines.

10.25 And here’s a timely illustration of the surreality – he’s back now from the procedure and awake. Each procedure carries risks and worries so it’s an enormous relief when he reappears. But he’s really very cross and I’d love him to go back to sleep. (Thankfully that’s what he’s currently trying to do.) And fortunately there’ve been no thrown punches this week.

10.45 He’s just really gathered himself and has shaken off the post op anger. Henry hates the mood changing effects of his medicines and fights hard to overcome them, although sometimes they’re too much for him.

11.00 Munching. Wait for the chemotherapy we have to take home. Four doses of Cytarabine (to be “pushed” into the port and a syringe full of Asparaginase (a jab into his muscle).

12.00 A nurse comes to lock Henry’s port. He stays accessed because of the forthcoming Cytarabine. But they flush the line (stuck into his chest) with saline and “lock” it with the anti-coagulant Heparin.

12.30 Home by taxi (public transport still banned). That was (unusually) speedy.

Heading home

Heading home

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