News of Alex ("Rubik's") Plunkett

This page is for all those of my contacts who have kindly asked to be kept informed, including friends abroad who are not personally acquainted with the dramatis personae.

My grandson Alexander Plunkett was taken ill on 14 February 2012. My daughter Lizzi, Alex's mum, drove him to St Helier hospital and had to struggle to get him into A&E (Accident and Emergency) as he was almost too weak to walk. St Helier sent a blood sample to the Royal Marsden Cancer Research Hospital in Sutton, who diagnosed acute lymphoblastic leukaemia (ALL). There being no bed available at the Marsden, he was taken by ambulance to the children's cancer unit at Southampton General Hospital, some 125km away. He promptly began a course of treatment including chemotherapy, steroids and blood transfusions, to which he began to respond well. On Monday 20th, his 12th birthday, he was transferred to the Royal Marsden to continue treatment, and on Friday 24th was allowed to go home from where he is continuing treatment as an outpatient (with occasional forays to St George's Hospital when things go wrong).

Thursday 14 february - It is exactly one year ago today that Alex was diagnosed and rushed to hospital. We are all grateful for your prayers and support.

Thursday 31 January - Lizzi learned today that Alex's end of treatment (EOT) date is 17/05/2015. Assuming everything goes as planned, that will be his last dose of chemo.

Wednesday 23 January Alex did another couple of lessons yesterday although he came home at break again as he was tired from walking up so many flights of stairs. He's not really staying long enough to be socialising but he has seen some of his friends from primary school so that's good news. He was due to go in again today but I haven't heard anything yet (5pm).

Monday 21 January Conversation on Lizzi's Facebook page:
"Have waved Alex off in his bright purple uniform to do a couple of lessons at his new school :-)"
"Where's the pics?? I was looking forward to seeing this purple uniform.."
"I literally brought him into reception, they put a uniform on him and took him off to a lesson so I didn't get a chance!I will try and get one in a minute when I pick him up but he hates having his picture taken at the best of times so I can't promise."
"How did it go?"
"Really well :) going back in tomorrow to see how much he can manage."

Wednesday 8 January Lizzi writes: Finally had a productive meeting at Alex's new school and am hoping he might get to start soon in some sort of capacity.... fingers crossed. He has missed so much and really needs to get back into a routine asap :)

Tuesday 1 January Lizzi writes: 2 doses of dex and Alex has now decided he wants sausages after having not eaten anything hot for the last few weeks! Another good job I wasn't up celebrating last night as I've now got to get up and dressed double quick to take him to McDonalds for breakfast and then to the supermarket for food...........

Friday 30 November Lizzi writes: Still waiting for a start date for [the Norwood] school. It is proving to be quite complicated but I'm sure we will get there eventually. On a brighter note, Alex has been dealing with maintenance really well (touch wood) although he's back on the evil dex next week, boooooooooooo

Monday 12 November Lizzi writes: Maintenance hasn't been too bad so far. Alex has just finished the evil steroids for this month so he is still suffering the after effects of those. We are hoping he can start his new school (in some capacity) very soon, they have given him a place so it's time to buy the PURPLE uniform, yes it really is bright purple, lol :)

Friday 26 October Little news over the past month reflects the fact that Alex is stabilising. He's still on "maintenance", which means he's still having regular treatment. This includes: oral chemo (at home) every day, another medicine every week, and, every month, a lumbar puncture (at the Royal Marsden) and a five-day course of steroids. Sometimes he will react badly to one of these and has to stay overnight (at St George's) for observation and stabilisation. A nurse comes in every day to check his blood status. Lizzi is now getting extra benefits for home-educating him, and this is supplemented by a home tutor on a regular basis (provided, I think, by his school). It now seems certain that he will soon start attending a different school nearer home, at least on a part-time basis.

Wednesday 19 September I Saw Lizzi and Alex yesterday and he looked and sounded OK. Lizzi is thinking of moving him to a nearer school.

Wednesday 5 September Lizzi says "We have decided that Alex is going to go into school tomorrow just for a couple of hours and see how he gets on."

Saturday 1 September Yesterday blood test results suggested that Alex's red cell count was low (6.8) and he went into St George's for a transfusion. Before this happened, however, they double-checked the count and found it was in fact 9.3, rendering the transfusion unnecessary. (He's already had 15 since the whole thing started in February.) They stayed overnight and he is now (10 am) on his way home.

Thursday 30 August Alex was back at the Marsden hospital today for the Cytarabine he missed last week. This has left him feeling rotten, and now that they're home again (5 pm) he has gone to sleep.

Tuesday 28 August Lizzi: I was terrified he was going to spike a temperature and we'd have to go back in again in the middle of the night because he woke up at 10pm with his sheets soaking, literally, and he usually only gets night sweats when he is on steroids. It's a catch 22, can't sleep at the hosp cos of the racket and can't sleep at home cos am paranoid he's going to need to go back again in the middle of the night :-(.

Monday 27 August Lizzi: "So we're finally home and fingers crossed we sill stay here. Alex still feels ropey but he has improved drastically since last week. Bloods again Wednesday and take it from there. I can't see maintenance starting next Monday (as it is scheduled to) and I can't see him going back to school next week (like we were hoping he might, even if it was only for an hour or two). Back to each day at a time I think".

Sunday 26 August Lizzi writes: "Looks like we might get out tomorrow... doc did say we could leave today in theory but we would need to have bloods done again in the next 48 hours and as the community nurses don't work on bank holidays and they will be mega busy with a backlog on Tuesday, it makes much more sense to stay here tonight, have them done in the morning and pray that they will be ok so he won't need any transfusions any time soon...

Friday 24 August "Blood cultures are normal, brain scan is normal, the only thing untoward is liver function which is showing some abnormalities. Doc says he is jaundiced. They are going to keep him on all 3 antibiotics for the next 48 hours and see how he fares. It is probably just drug build up from all the crappy chemo he's had in the last few weeks..."

Thursday 24 August. Alex is now in St George's being treated for adverse reactions to Monday's heavy does of chemotherapy. Lizzi reckons they will be there till Friday at the earliest.

(11.53 a.m.) Lizzi writes: "hb count is now critical, it has dropped below 6 (they transfuse at 7) so we are gearing up for blood.

Wednesday 23 August. Alex had heavy chemo two days ago and it left him too weak to take his additional medication. Today's bulletin: Temperature going up, it is now 37.9. If it hits 38 we need to be thinking about getting organised for an admission :(

Sunday 19 August. Lizzi writes: "Marsden all day again tomorrow but at least they've got air conditioning, lol!!".

Wednesday 15 August. Alex had extensive treatment at the Royal Marsden on Monday and is not very active at the moment. Lizzi reported "Treatment went ok today, poor Alex is feeling really sick (which is normal). Highlight of the day was seeing chicken woman (although I think Sandra and I enjoyed it more than Alex who wasn't really in the mood, lol)". (The "chicken woman" is a clown doctor from the Theadora Children's Trust. Lizzi calls her that because the first time they saw her she had a crocheted chicken tea-cosy on her head. I rather suspect she amuses the parents more than the children.)