Friday, 13 January 2012

Friday the Thirteenth

I'm not superstitious but I did wonder if today is going to be lucky or not.
It started badly, early hours of the morning in fact when some selfish ppl decided to come back from a wild night out and very noisily crashed and banged their way back to their rooms opposite. 4am, 4 friggin ay em.
Well that was it, tossed and turned for next couple of hours before giving in at 6am.
Rachel was the same, grr selfish gits. Well like the adults we are, on leaving our hotel room, we acknowledged courtesy to the other guests (who were probably sleeping off a mega hangover) and SLAMMED the door about a million times and then ran to the lift sniggering. HAR HAR HAR

We set out for the hospital, with poor starving Harry minus blankets cos his stupid mamma forgot them. We came up behind a mum (with local authority tenant type dyed black hair) pushing a baby in a pram and her mum who lit up some stinky cigarettes so we crossed over quiuckly to get away from (and these are Raychels words) those scroaty people. Smoking wi kids is disgusting and a child should be able to take their parents to the courts of human rights to put a stop to it.
Anyway, we arrived on the ward of chaos, after a quick detour via the eye department for an eye test. Harry decided that he wasnt going to look at the interesting black and white images, and I don't blame him, they were not that interesting. He had his nasty eye drops squirted in by a eye doc/nurse that looked about 12 yrs old. Am I getting old? no she really did look about 12.

Second thing to not go right, Harry was second on the list. He has never been second, the youngest always go first, so here he was no longer the youngest, so who was the youngest???? And yes, in walked the very same people we had legged it away from to avoid their stinky smoke. erm hope they didnt hear us. So later than usual anyway, their little 7mth old Alfie went down to theatre and off they went to get some air, or nicotine, and usually you're asked to come back after half an hour as it really doesnt take too long. An hour later they sauntered back, armed with a shopping bag. COME ON, Harry is starvin, the nurses are looking for you, where the hell have you been???

And because of their lateness, I had to wait for the child after Harry to go down before the doc came and spoke to me. I was angry, because

Today I needed an early get away cos Danny starts his run of night shifts tonight and I had to get back in plenty of time so he could go to work and I take over the other 3 kiddlies.
Anyway, my anger didnt last long, because no matter who they were or where they came from, their little Alfie was too diagnosed with bilateral retinoblastoma today. Something no family or child should have to go through, and I did the decent thing and offered my support, which was gratefully received by them both. Poor Alfie, poor family, poor Harry I HATE EFFIN BRB.

Anyway, our news was a mixture of good and not so good. Harrys right eye had no new growth, but his left had a few seedlings again which they lasered. Back in 3-4 wks again. We had a longer talk with Dr Jenkinson who is lovely. She explained that they think the seedlings that are growing are from the original tumors and not actually new tumors. Same difference to me, things are growing, new or not. The existing tumors still look inactive. She arranged for a hearing test to be done, and although I know his hearing is fine, they want it in black and white, probably if he developped hearing problems later down the line they could say it wasnt an effect of the chemo. She also confirmed he will need kidney function tests every 5 years for the rest of his life, due to Carboplatin, one of the toxic chemo drugs he had had.
She also acknowledged (and Rachel and I are proud that we instigated it) that parents needed a bit better guidance for what happens when chemo finishes. We were under the imprssion it was only the first few visits new growth would be seen, and that was put right by Maureen at our last visit (see an earlier blog)but it can go on for years. She said she will formulate a fact sheet and talk about it at their next team meeting so they can manage new diagnosis parents better going forward.

Well our driver finally turned up at 1.45. Not exactly the early getaway we'd planned and it was the same driver who'd saved us from crash worse than death on the motorway last time. Thankfully the motorway was clear and I landed home just after 4 to be greeted by my other beautiful little angels. Am away only overnight but I don't half miss them. I made us all some tea, and William proclaimed that he doesnt like leaves, he he I'd given him some lettuce and off Danny went to work.

So Friday 13th, we'd had a little luck, Alfie's family had none. Harry's fight goes on and the amazing little smiler he is will continue to touch the hearts of all he meets. I am warning you cancer, stay away, well away.

Here's the smiley boy


  1. Oooooooh you forgot to mention Arnie, and the fact I reminded you of the support a stranger gave to you and how our other suggestions will probably redesign the whole of the children's oncology unit!! I'll blog it tomorrow! Xx

  2. Grr its the seedlings that got Luke. i hope your dr's have beeter luck at controling them then mine did. Out of curosity ask your Dr. lady there if she's heard of Lukes dr. Dr. Galie (gal-lee) from Sick Kids in Toronto. Lukes been adjusting well to his temp eye, we go in next week to get the permanant one.