Luton & The Aftermath - Diary

[celtic]

I should add that the tumour had started in her adrenil gland and had worked it's way into her hip, which in turn had got into her blood & bone marrow. The biggest problem with it getting into her blood was that it can then go wherever it likes, and quickly!

A few days later one of the consultants had increased the chance of survival up to 20%, not really sure why but accepted it as some more hope and Holly's treatment began.

She had long hair down to the bottom of her back that we got cut in preparation for the inevitable hair loss that would come with chemotherapy, the plan was set out. 8 rounds of chemo, followed by surgery to remove the tumour if the chemo hadnt cleared all of it, followed by some high dose chemo and a stem cell transplant (which is very clever) and finally radiotherapy.

This started in mid feb, surgery was not required due to the chemo shrinking the tumour sufficiently which was great news and all in all everything was done and 'clear' by mid october 2009.

[celtic]

Holly just seemed to breeze through it all, she was one of the oldest kids on the ward and seemed to take on the reponsibilty of advisor to the new kids when they came in. She was sometimes a bit matter of fact about things, like, I lost my hair, but it's ok I got a really nice wig instead. I think some of the kids weren't really ready for Holly and her honesty sometimes. But she meant well. And in most cases helped the other kids settle in.

The radiotherapy was done over a 3 week period, it's a bit strange how they do it, 3-4 minute blasts, every weekday for 4 weeks. As Holly was no longer staying in hospital this meant a 2 hour round trip for 4 minutes of treatment. She was fine with it though so that was ok.

Some more treatment at home on and off every two weeks I think and Holly seemed to be flourishing, her hair was growing back, she had started secondary school and her Hickman line  (they use this to feed the chemo & other meds through and also to take blood etc) that she had fitted via surgery had been removed. All was looking good again.

[celtic]

Holly had been given a free holiday in Florida during a school disco held in her honour in May 2009. We made tentative plans in Nov 2009 to take her in May 2010 and also discussed going to Malta in the summer of 2010, that's really how good things had got.

But at the end of Dec 2009 / beginnig of Jan 2010 Holly just wasn't right, same loss of appetite, pain in her leg, tiredness for no real reason. Two weeks or so of more tests and nothing could be found. We knew Holly wasn't right and so did the consultant so he decided to do a small op to get a sample of her bone marrow to see what was going on.

It was bad news. The neuroblastoma was back.

This was the worst news possible. We knew that if it came back there was no cure for it. We didn't need telling. I wasn't at the hospital that day, Holly's mum phoned me to tell me. Holly was with her and she couldn't speak properly in front of her. Once she told me it was back, she didn't need to say anyting else. I was gutted.

[Drain Alien]

Dunno wot to say. As per texts. x (not for u, obv)

[celtic]

Like i said earlier, that day was a year ago today. We didn't know how long we had with Holly, we just knew that it wouldn't be long. She was given some treatment to help prolong her life and give her a decent quality of life for the time she had left. In truth, the treatment had no affect, it just made her more ill and the planned 2 lots of treatment was cut short at 1. It wasn't doing her any favours.

On March 12 the consultant confirmed that it was in Holly's best interests that the treatment was stopped. By now, Holly had to be told, the consultant said that the truth is she probably already knows. She wasn't stupid, she had access to the internet quite freely and I know she had done some research into her illness.

Her mum phoned me to say that she thinks she should tell her. I agreed.

Will spare you the details but Holly was understandably very upset, but within the hour she had just seemed to accept it and that was that. I went up to Addenbrokes later that day and she was her normal bright cheery self, chatting about the telly and facebook and all the normal stuff she liked. We never discussed that she was going to die. Looking back I can now see that she done all she could to avoid talking about it with me, she knew that i knew, and i knew that she knew. We didn't need to say anything to each other.

[HOLDorFOLD]

xxx

[Laxie]

Dunno what to say so will just send you cyber hugs.  xx

[pleno1]

You're a great guy.

[celtic]

So, plans were made to get Holly home as soon as possible. She wanted to go home, and who were we to argue?

She was taken home on the Tuesday, accompanied by Kirsty. The ambulance put the blue lights on for her all the way from Cambridge to her home in Cheshunt and I think she quite enjoyed that.

She was carried upstairs by the ambulance men and she even managed to have a go at him for smelling of smoke. He had a crafty fag while waiting for her room to be cleared and she wasn't gonna let him get away with it

She was sat upright in bed, quickly demanding drinks and the remote control so she could watch eastenders or some other crap that she loved watching. We stayed for a while then went home.

We visited again on wednesday and thursday and the deteriation of her was quite sudden. It was almost as if she was just happy to be home. It's quite common apparently.

We left again on the thursday night, not really sure what was going to happen, but other than a phone call from Holly's mum we were going back in the morning. The same plan as the previous nights.

When I got home that night, I felt this incredible urge to tell everyone what was going on and how proud of her I was and complied a post. I couldn't decide whether to post it or not. I'm normally a quite private person, but thought fk it. I should tell everyone. The response on the thread was amazing and I was happy that i posted it.

I stayed awake til about 4 that night, eventually falling asleep on the couch. Shortly after, the phone rang, it was Holly's mum. She simply said 'Holly's gone'

[Drain Alien]

i just got a "lol" out of Vin via text (to some stupid comment from me obv)
under the circumstances that's fricken unreal.

not sursprising that you're gonna talk about your little princess on here m8;
You should be bloody proud of her.
xx

[The_nun]

My chest has this massive crushing feeling for you as we relive through your posts what you go through every waking day.

[celtic]

I went straight round there, she lived 10 mins away and we stayed there for a few hours I think. I phoned my Dad to tell him and him and my mum came round to say their goodbyes.

A friend of Holly's mum arranged for a priest to come round. I was brought up as a Catholic but was by no means a practising one. i have no interest in religion now, if anything I'm sort of anti it but Holly's mum is still a believer and now wasn't the time to start arguing the toss. He done his business and left.

I stayed for a while longer and Holly's mum arranged the undertakers and stuff. Me and Kirsty left. I didnt want to be there when they took her away and Holly's mum was fine with that.

We arranged the funeral the next day I think, can't really remember now, but it was set for 6 days from the day Holly died. Holly's mum wanted a burial and a service at the catholic church where Holly had been christened and had made her holy communion. Again, I wasn't going to argue. Holly would have be annoyed at me for causing a fuss, so I didn't

[Laxie]

Sorry to de-rail and ignore until you're ready.  Regarding the whole religion thing.  Did you already have it in your head it was a load of rubbish or was Holly's illness and suffering the reason for your decision?  I'm of the same thinking as yerself and have my reasons (was also brought up Catholic) just curious as to what sealed the deal for you.

[George2Loose]

In tears here. No parent should ever have to go through this.

[celtic]

On to the funeral, It was a smallish church in Cheshunt, but it was packed. I had decided to stop some people coming for various reasons, some friends, some family, some colleagues. Loads of reasons why but won't go into that.

Lots of Holly's friends from junior and secondary school had made the journey to the church. It was nice to see so many in attendance, The funeral went well, and had a little bit of humour added by the bumbling priest trying to operate a CD player helped lighten the mood a bit.

We held a little get together at a local golf club that backed onto Holly's primary school afterwards and held a collection for a couple of good causes rather than it be spent on flowers and stuff like that.